tag:blogger.com,1999:blog-6101846349720725342024-03-14T07:19:09.071+00:00THE GIGGLE FEST CRY OR LAUGH, YOU CHOOSELyndylouhttp://www.blogger.com/profile/18133867788700520182noreply@blogger.comBlogger271125tag:blogger.com,1999:blog-610184634972072534.post-31541845124462933132017-01-10T22:50:00.000+00:002017-01-10T22:52:12.593+00:00Your chariot awaits....<div dir="ltr" style="text-align: left;" trbidi="on">
A couple of weeks after Jack passed away, Holly had her graduation ceremony in Edinburgh.<br />
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We had 3 tickets for the ceremony, not including Holly's one. Jack's one was now free. for obvious reasons, but then David got a job and wasn't able to go either.<br />
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So Holly asked her Auntie Jacqui and my friend Kathy to come to the ceremony instead.<br />
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During that two weeks, I kept telling Holly that there was a major flaw in the plan and that I didn't think that she'd thought it through properly. She kept reassuring me that all tickets were accounted for and because I was too tired to explain what I meant, I just kept quiet.<br />
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About 5 days before, Holly, Kathy and I were sitting discussing the ceremony and the logistics of getting there etc when I brought the subject up again.<br />
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This time I had to explain to them that yes, we had 3 tickets but that only two of them were for actual seats and the other one was just a space.....for a wheelchair!<br />
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They both looked at me aghast. You should have seen their faces!<br />
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As the realisation began to sink in, I laid out <b></b>our options.<br />
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<b>Option one</b> was just to phone up the establishment, explain that we needed a seat put there instead and the reasons why and hope they could accommodate us.<br />
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<b>Option two</b> was to just bring our own wheelchair for one of us to sit in!<br />
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There was complete silence while we all thought about it and Kathy suggested that the easiest option was to just phone them. <br />
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On further discussion both Holly and I felt that we were too fragile and knew that we would not be able to make the call without crying our eyes out and we didn't want to put ourselves through that.<br />
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That meant that Kathy would need to make the call but the more Kathy thought about it the more she felt she couldn't do it either without breaking down.<br />
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None of us wanted to go through that trauma if we could avoid it.<br />
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So that left us with only one option!<br />
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The next question out of both their mouths was " yes but where are we going to get a wheelchair from?"<br />
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I explained that the wheelchair we had borrowed for Disneyland Paris at Christmas for Holly was still at my dad's house so I just needed to fetch it.<br />
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That made us all laugh as obviously I had really really thought it through!<br />
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Problem solving is my thing you know.<br />
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Holly was off the hook for sitting in the wheelchair as she had to sit with her class so that left myself and Kathy. I jokingly said that I had the most experience pushing wheelchairs so it made sense for it <i>not</i> to be me.<br />
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OH MY GOD you should have seen Kathy's face...absolutely priceless!<br />
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She kept saying "really? it has to be me???" Which made me double over in hysterics.<br />
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She pays a high price being my friend!!!<br />
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That decided, I wasted no time in fetching the wheelchair from my dad's house. It wasn't the most attractive looking thing but it would do. One of the foot rests kept falling off whilst we were in Disney so we'd used the tools we had to hand at the time and it was held on by a bandage! The Beverley Hillbillies really didn't have a look in.<br />
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On the day in question we parked at the station next to the university because we would be returning to the university for a reception after the ceremony.<br />
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There we were in our glad rags, all dolled up to the nines. Since it was my idea, I took responsibility for getting the wheelchair to the venue.<br />
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Believe me when I tell you, that it is no mean feat trying to navigate public transport in 6 inch heels. It becomes an even huger task when trying to navigate said public transport with a folded up wheelchair which seemed to have a mind of it's own and kept heading in the opposite direction to where I wanted it to go.<br />
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It was only later that we discovered that one of the front wheels was buckled!<br />
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The train was packed solid so we had to stand, I had one hand on the wheelchair whilst clinging onto the luggage rack for dear life trying to stay upright on my sky high heels.<br />
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Having successfully survived the train ride to Edinburgh we then had to make use of the numerous lifts and endure the stares of people wondering why the hell we were wandering around with an empty wheelchair. Most of the time, I could barely look at Holly or Kathy in case I started laughing hysterically.<br />
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So inappropriate I know.<br />
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Once onto Princes Street (the main shopping street in Edinburgh) navigating the crowds became a huge issue. Edinburgh in July is awash with tourists and the pavements get really clogged up so I made the executive decision to go via the Princes Street gardens.<br />
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We stopped for a rest there as we'd left early to make sure we had plenty of time.<br />
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<tr><td class="tr-caption" style="text-align: center;">Kathy and Holly in the gardens</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">Kathy's seat, complete with Holly's walking stick</td></tr>
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After a short rest, we headed off again, pushing the wheelchair which by this time we had opened up as it was much easier to push that way.<br />
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Once past the art gallery we had to go down a large set of steps into the next part of the gardens, which turned out to be a two man job. God only knows what people were thinking but hey, this is Edinburgh so really, anything goes.<br />
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I was getting a bit hot and bothered as we approached the large set of steps to climb out of the gardens. A man shouted out to us asking whether or not we needed help. I turned to him to say "no, but thank you anyway" and that's when I noticed that he was on crutches. It made me smile as it's so like the disabled community to help each other out even when they are clearly not able.<br />
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Once out of the gardens it was another ten minute walk to where we needed to be, the Usher Hall.<br />
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I kept asking Holly how much further so that I would know when to get Kathy into the chair. About 200 yards from where we would turn towards the Usher Hall Holly signalled to Kathy to get into the chair. Even getting into the chair was a comedy of errors but we managed it and I had the chair moving before Kathy had properly got her bum on the seat! I did stop to let her get comfy before rounding the corner quite calmly and sedately as if it was all perfectly "normal".<br />
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Once at the main door, Holly went off to get into her gown and I parked up Kathy's wheelchair, positioning her so that she could see all the comings and goings. I bent down to speak to her saying "now that you are in this chair....welcome to the world of invisibility!"<br />
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<tr><td class="tr-caption" style="text-align: center;">Kathy in her chariot!</td></tr>
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On cue, just to prove my point, a bunch of students nearly fell over her as they were stepping backwards as a group whilst getting their photo taken. I had to stand at the side of the chair just to protect her! As it got more crowded, she was nearly brained by a person's bag as they tried to get in between Kathy and I. It's a reality that people just don't look down, so if you are not at eye level then you don't exist!<br />
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What made us laugh the most though was when Jacqui turned up and she didn't bat an eyelid at Kathy being in the wheelchair, didn't even ask. <br />
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That says a lot about the antics of Kathy and I doesn't it???<br />
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When the doors opened, we got in fairly quick and I got Kathy's chair into position and laughingly told her that she'd better not need a pee or stand up and adjust her knickers or anything as there would be trouble. I think she was terrified to move!<br />
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The ceremony went without a hitch and when it was Holly's turn to go on stage, true to form and following the tradition of all previous award ceremonies she attended, there was a lot of noisy whooping and yelling and we made quite a ruckus for there only being 3 of us.<br />
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I think we did her proud.<br />
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After the ceremony we made our way outside. It was really crowded so navigating the wheelchair was no picnic and as your average wheelchair is low down, Kathy couldn't see a damn thing.<br />
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Holly joined us after a short while and we had our photos taken with her in her graduation get up.<br />
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<tr><td class="tr-caption" style="text-align: center;">lol</td></tr>
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I made Kathy use Holly's walking stick to stand up from the wheelchair. That poor girl was made to play the part for real!<br />
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We then made our way to the nearest taxi rank to get a taxi back to the station. There was no way I was pushing the wheelchair all the way back along Princes Street. It was just too traumatic!<br />
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In order to get to the taxi rank, we had to cross a really busy street. I was pushing Kathy up the hill to the crossing when Holly spotted one of her favourite lecturers behind her.<br />
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So she walked back to talk to her. <br />
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Kathy and I just watched her walk away. It never occurred to either of us that Kathy could take this opportunity to get out of the chair since we were now out of sight of the hall. <br />
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Instead we watched as Holly's lecturer engulfed my girlie in her arms for a very big bear hug and I knew from that hug that Holly had just told her about Jack.<br />
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As they caught up with us there were tears rolling down Holly's face. I had a hard time holding it together myself at that point.<br />
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Holly introduced us to her lecturer and we crossed to the island in the middle of the road.<br />
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Being an experienced "wheelchair pusher" I had already checked the road to see if there were cars coming and as there wasn't I started to push the wheelchair into the road.<br />
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Cue Kathy who wailed "I'm moving" and began to cling onto the chair for dear life. <br />
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I was laughing so much that I was unable to reassure her that I hadn't just let her roll off and then nearly gave her a heart attack when I couldn't get the front wheels of the chair up onto the kerb on the other side of the road.<br />
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After a couple more attempts, with the help of Holly we made it just as cars were about to run us down.<br />
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I was still laughing, hysterically I think by this time!<br />
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Kathy though, had had enough and said "aww fuck this, I am getting out" and proceeded to try and climb out of the chair before I had even got it properly on the pavement!<br />
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She leapt up so fast that she nearly fell out much to the shock of Holly's Uni Lecturer who tried to help her.<br />
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Holly reassured her, that she could indeed walk and then followed a very awkward explanation as to why she was in the chair in the first place!!!<br />
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OH MY GOD....I just wanted the ground to open up and swallow us.<br />
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As you can imagine, the Uni lecturer made a quick getaway!!!!!<br />
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I swear she must have thought we had gone mad. And you know what, at that point, so did I!<br />
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At the taxi rank, as I tried to get the wheelchair into the taxi and fell in head first, I was starting to wonder why I thought making that phone call would be harder than this!!!<br />
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We had a bloody good laugh in the taxi but then had to repeat the whole process of going down in the lift at the train station and holding on for grim death to the chair on the train.<br />
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You have no idea of the relief I felt when finally I was able to shove it into the boot of the car.<br />
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We then made our way to the reception which turned out to be fairly unexciting but to be honest, I felt emotionally and physically exhausted by then so was happy to leave within half an hour.<br />
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It was a pretty tough day for us but we made it through in our own unique way and I think Jackyboy would have been very proud of us.<br />
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Lyndylouhttp://www.blogger.com/profile/18133867788700520182noreply@blogger.com2tag:blogger.com,1999:blog-610184634972072534.post-90465624884573589192016-09-08T06:00:00.000+01:002016-09-10T21:14:04.941+01:00It's all about me me me....and if not....then why not?<div dir="ltr" style="text-align: left;" trbidi="on">
It will be 11 weeks on yesterday since my precious boy took his last breath. I don't know how I have survived but here I am, still standing, still breathing.<br />
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Every morning that I wake up, for a tiny split second, I have that moment where my mind hasn't fully caught up and Jack is still with us like nothing has happened and then reality kicks me in the stomach.<br />
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That alone is enough to floor me. Yet I still force myself out of bed, make myself stand and face the day. It isn't a choice, it's just instinctive.<br />
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I am still wading my way through the financial implications of Jack's passing. Having no money no longer scares me, it is what it is. Bad enough that Father of the Year has pulled the financial rug out from under me (his money for Jack paid the mortgage) but now he has done it to his daughter. He has stated categorically that he will not give her any financial support if it benefits me in any shape or form. She is living in my house, so obviously she would have to contribute financially as any adult would but not according to him. No, he would rather see her homeless or having to move out of her home at a time when she really needs her mum and I need her. She has no job yet and is still applying for benefits but he doesn't care about that.<br />
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<tr><td class="tr-caption" style="text-align: center;">The two loves of my life...</td></tr>
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This is a form of parenting on a whole new level, one I could never begin to understand in my wildest dreams....but there you have it.....it's fuelled by bitterness in all it's glory and it matters little to him the consequences for his daughter.<br />
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Bitterness that is borne from the fact that we didn't allow him to have his own way during the last week of Jack's life.<br />
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Let's be clear, Jack didn't know him. He chose not to know his son but he always blamed me for that.<br />
Narcissists never take the blame for anything, they are always the victims.<br />
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Holly and I were Jack's welfare and financial guardians. In order for this to happen, FOTY had to give up his rights to his son, which he did without a backward glance.<br />
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We took these powers seriously and we only ever wanted the best for Jack.<br />
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So when he became seriously ill this time, Holly and I made some tough decisions. One of those was to allow his father to spend some time with him. This didn't mean that he got to spend the same amount of time with Jack as we did but he didn't see it like that and that is when things became difficult.<br />
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He never left us alone for a second with Jack, he gate crashed every personal moment with our beautiful boy yet expected to have quality time alone with him himself. He became demanding and caused us lots of problems in the hospice and created an atmosphere so bad that his mum and Holly were struggling to cope with him. Worst of all Jack became agitated by the atmosphere so things came to a head and I had to ask him to leave. We still allowed him to visit with Jack for an hour in the morning every day until he became too ill for visitors but that wasn't good enough apparently.<br />
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So we protected Jack, tried to surround him with all our love, put his needs before ours and made sure his last days consisted of our undivided love, care and attention so that his last hours were spent with the people who had been there for him all his life, Holly and I.<br />
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Because we put Jack first and not his father, I have to suffer his wrath and the only way he has to hurt us is financially!<br />
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He thinks what he is doing will cause me pain but what he doesn't realise is that I am already in such incredible pain from losing my beautiful boy that anything he does to me at this point can't touch me. It is just a tiny ripple in a huge huge pond.<br />
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His bitterness makes him even more ugly than he already is.<br />
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Holly and I regret nothing.<br />
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Lyndylouhttp://www.blogger.com/profile/18133867788700520182noreply@blogger.com1tag:blogger.com,1999:blog-610184634972072534.post-10750221275558104752016-07-28T21:16:00.003+01:002016-07-28T21:16:34.850+01:00So much face rain<div dir="ltr" style="text-align: left;" trbidi="on">
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Yesterday the local council came and took away Jack's bed. One of our dogs refused to leave the room and lay under the bed. No matter how much I called on her, she would not leave the room while they dismantled the bed.</div>
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The bed was funded by the NHS so suffice to say it had to be returned. Whilst I had no issue with that, the fact that they previously had tried to take it back 2 weeks after he died was heart wrenching to say the least and I told them no.</div>
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Yesterday morning when they called, I wasn't given the option of refusing, they wanted it so it was only a matter of when. They suggested that afternoon and I agreed.</div>
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When I put the phone down I could barely breathe. It has only been 5 and a half weeks since he died. That bed represents so much to me, in ways I couldn't even begin to tell you and now it was another thing that was being taken away.</div>
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I cried and cried and then I gave myself a talking to and told myself to suck it up. I went into his room and stripped the bed of all it's bedding, cleared the equipment still left under his bed and put the bedding in the laundry basket. Just ordinary everyday stuff that nearly brought me to my knees.</div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgar-clKB6UljKhAjWuwUe7y3Q_sIkkxDCRfDQUBNBnXer0TfMg7GJgRnKXwe3kFq0-6bPUBD3K4oFkSalcvZyykysx0Nj22ScIE6awLF4FV1UjLJXTs4z7VdwE-CCg5Rv_MuckNqVtQFQd/s1600/13615223_10206227719562163_6979395808103769163_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgar-clKB6UljKhAjWuwUe7y3Q_sIkkxDCRfDQUBNBnXer0TfMg7GJgRnKXwe3kFq0-6bPUBD3K4oFkSalcvZyykysx0Nj22ScIE6awLF4FV1UjLJXTs4z7VdwE-CCg5Rv_MuckNqVtQFQd/s320/13615223_10206227719562163_6979395808103769163_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Loki lying in down on the space where Jack's bed had been</td></tr>
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So much of what is happening, I have no control over.</div>
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Things have been made even harder by the fact that his father who had very little to do with him the last 18 years withdrew all financial support the day he died.</div>
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Although in my head I expected this, the body blow it has dealt me is beyond anything I thought I could possibly feel on top of all this grief.</div>
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I have been both mum and dad to his two children. I have been everything to our son whose health needs were so complex that he required care 24hrs a day, 7 days a week. I looked after him myself until he was 14 and his health deteriorated so much that I needed overnight care.</div>
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FOTY (father of the year) once told me that it was my choice to look after Jack. Did I have a choice? I gave birth to him, so as far as I was concerned that was the only choice I ever had to make...to be his mum. I didn't realise that having a child with health needs, who was not society's version of "normal" meant you suddenly got to choose whether to look after them or not.</div>
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I chose to be his parent and he chose not to be.</div>
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Jack's dad is a wealthy man. He had planned to support his son for the next ten years financially whilst he was still alive. He has just taken his daughter on a safari holiday that cost $20,000.00 and spent £30,000.00 on a new car.</div>
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By withdrawing his support financially he has thrown mine and Holly's life into further disarray and turmoil as his financial support was what paid for the roof over our heads. It also covered the huge heating and electricity bills that incurred keeping Jack warm and his vital equipment fully charged not to mention the extra costs of having carers in your home every night throughout the night.</div>
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Both Holly and I are barely able to function, the grief is so damn raw. I can't even remember how to make a cup of tea at times never mind think of finding a job!</div>
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Benefits at this point wont cover it so I need to do something else.</div>
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So we have started to sell off things just to keep afloat. Among them, precious things that belonged to our beautiful boy because his stuff cost the most. Everyone knows that anything you have to buy for someone disabled costs three times the money so it makes sense to start there.</div>
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People keep saying to me: take your time, do this and that when you are ready.</div>
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Ready, I am a world removed from but needs must and I can't afford to be precious.</div>
<blockquote class="tr_bq" style="line-height: 25.5px; margin-bottom: 24px;">
<span style="background-color: blue;"><span style="background-color: white; font-size: x-large;"><span style="font-family: "georgia" , "times new roman" , serif;"><span style="color: #3d596d;">"</span><span style="color: blue;">Do you not know that a man is not dead while his name is still spoken</span><span style="color: #3d596d;">"</span><br /><span style="color: #3d596d;"> Terry prachet</span></span><span style="color: #3d596d; font-family: "merriweather" , "georgia" , "times new roman" , "times" , serif;">t</span></span></span></blockquote>
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His financial support would have given me the chance to take my time to adjust to this new life without my beautiful boy, to just allow me time to grieve and get my head around this huge loss and heartbreak.</div>
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No, instead, he is far too interested in punishing me for being the parent he couldn't be, putting Jack's needs before his.</div>
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Ten years ago, just after my mum died, he filed for divorce after I had been trying to divorce him for 4 years. He thought he could kick me when I was down but I got up and fought him to keep this house as it was our home but also as an unpaid carer I had no financial future prospects apart from the house. I got the house but unfortunately complete with mortgage. </div>
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Now here I am again, fighting to keep our home so that I can have one less traumatic event to go through. I know that Jack would have hated this happening to his sister and I.</div>
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The only way is up..........</div>
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Lyndylouhttp://www.blogger.com/profile/18133867788700520182noreply@blogger.com0tag:blogger.com,1999:blog-610184634972072534.post-36478038401060933652016-07-04T11:49:00.000+01:002016-07-10T21:42:40.288+01:00Partings are such sweet sorrow<div dir="ltr" style="text-align: left;" trbidi="on">
My beautiful boy gained his angel wings on the 17th June at 12.45am. Holly and I had him in our lives for 18 years and 3 months.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhd-1JOlX4CWtXYunQjcd6sjyO7kwnuI6FQbUWZAZLcDMO1CSBbODF81qrlVCf-VDVkWTaUVcPxVk2C3dGQbgzcaUJN379bx3V3ZcMBqte4gEq3SehQpQeBS_lECzgpGK0R5nPjN6ZQH96W/s1600/328791_3243813461256_1743612005_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhd-1JOlX4CWtXYunQjcd6sjyO7kwnuI6FQbUWZAZLcDMO1CSBbODF81qrlVCf-VDVkWTaUVcPxVk2C3dGQbgzcaUJN379bx3V3ZcMBqte4gEq3SehQpQeBS_lECzgpGK0R5nPjN6ZQH96W/s320/328791_3243813461256_1743612005_o.jpg" width="240" /></a></div>
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We are trying so hard to be strong right now but the tears are endless and the void he has left behind is huge.<br />
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I know he was loved by many at home and abroad which was evident by the amount of people who have contacted me on Facebook.<br />
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It was a complete and utter privilege to be his mum and I have so many memories of him to cherish.<br />
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Lyndylouhttp://www.blogger.com/profile/18133867788700520182noreply@blogger.com2tag:blogger.com,1999:blog-610184634972072534.post-33546550342695965122016-04-21T11:27:00.000+01:002016-07-10T21:46:00.390+01:00The Sound of Silence<div dir="ltr" style="text-align: left;" trbidi="on">
I have always been a sociable person, loved lots of noise, music, people coming and going but lately, not so much.<br />
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As Jack's condition has deteriorated so much over the years, I have needed more and more outside help coming into the house just to get him up in the morning and put him to bed.<br />
<br />
I have gotten used to this, albeit very slowly but because he is now transitioning from child services to adult services the amount of people coming into our house has ramped up to the point that it no longer feels like home!<br />
<br />
It is a necessary evil at this point as looking after Jack requires a person to have more skills than a ninja! There's training for his pep mask, nebuliser, suction machine, cpap machine, peg training, percussion training (and no that doesn't involve music!), epilepsy training, VNS training, cough assist machine, medication training and then there is the whole other part of medication....the As Required Meds!!. Then there is the theory to learn about why we have to use these tools in his care.<br />
<br />
In order to gather information about Jack and his care I have had loads of people coming to visit to find out what they need to do in order for the transition to go smoothly.<br />
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So far we have had visits from the physio, dietician, social worker, community nurses, management from the new respite service, carers from the new respite service doing shadow shifts, occupational therapist to name but a few. These people are brand new to Jack, Holly and I so we are having to slowly build up a relationship with them, which takes time.<br />
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The transition only really started in January as there was a bit of a mix up and Jack's file ended up with the wrong social work team. The right team then only had 3 months to get a package in place before Jack turned 18. The respite unit he had been going to as a child were not willing to negotiate keeping him on a couple of months more after his 18th birthday to give us a little more time to get the adult respite unit up to speed. So we were really up against the clock.<br />
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I have learned that what is acceptable in Children's Services doesn't easily transfer over into Adult Services. They have to have a brand new protocol for EVERYTHING!!! Written in a completely different format too!<br />
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This is a good thing in my opinion but oh my, what a shock to the system that has been.<br />
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In our house, we have a camera in Jack's room leading to a monitor in my living room. This means when Jack is in bed at night asleep or not, as the case may be, I am able to keep a close eye on his breathing, seizures, whether or not the cpap machine is leaking as there is no alarm on it, whether or not Jack is bypassing the cpap, whether or not he is attempting to climb out of the bed or pull the hose off of the cpap! This is a very useful tool in his care because it's either that or I have to be in the room with him at all times which I have done and he then doesn't sleep very well at all as he is aware of the other person in the room. Jack also has what they call "cot sides" on his bed and this is also an issue of concern in Adult Services as this is seen as restraint. Without them, he would fall out of bed as he has no sense of danger, no saving reactions at all. I know this will happen because it already has!<br />
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The camera, monitor and cot sides, according to the Adults with Incapacity Act is seen as a Deprivation of his Liberty. I had never heard of that sentence in my life before but believe me it is indelibly printed onto my brain now.<br />
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No one is able to look after Jack without this valuable tool. It doesn't replace us checking on him as he his checked hourly when fast asleep and every 15 mins when agitated or restless. This tool was requested by the Occupational Therapist when he was about 9 as the epilepsy monitor on his bed was not picking up half the seizures that he was having and therefore I was missing so many of them. Usually he was at the laboured breathing stage of the seizure before I would hear it through the baby monitor I had at the time. I would then have to run at breakneck speed, down the stairs and through the hall to his room to try and help him.<br />
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Believe it or not, we had three separate doctors coming to our house last year during the application Holly and I had put in to be Jack's joint guardians. They saw what we had in the house in order to keep him safe but not one person picked up on this being an issue but it is now.<br />
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Jack's social worker sent a letter to our local Paediatrician at Dr Gray's Hospital and she wrote back detailing the need for these tools and the reasons why he can't be looked after by anyone without them. Respite are happy with this and have a copy of the letter which the Care Commission have said is sufficient evidence for them to use the cot sides, camera and monitor but it's not for us!<br />
<br />
So now Holly and I have to apply for what is called a Variance to be added to our Guardianship order, giving us the power to use these tools to keep Jack safe. It is so damn unbelievable. It has shocked the social worker at Rachel House children's hospice to the point that she was unable to form a sentence without getting extremely angry for quite a while.<br />
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No matter how crazy if seems to me or anyone else, the facts are that it needs to be added into our Guardianship Order. So now I just want to stop talking about it and get it done.<br />
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Jack had his first four nights of respite with Adult Services on the 8th April. Unfortunately respite didn't have a suitable bed for him as the one he requires had not been ordered; this was due to a confusion as to whether the funding came from the NHS or from Social Care. It has since been ordered but this meant that the respite care had to take place in my house.<br />
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Sooooo many people coming and going, it was crazy! I managed to get an hour or two respite, here and there but I think I was more exhausted by the end of the four days than ever before. Saying that though, it was really really useful and I think the staff are perfectly capable of looking after my complex but very gorgeous boy, they just need to relax a little. It was also good for them as they were able to pick my brains at any time and also see that I am quite a laid back, approachable person which makes it easier for them to ask me questions.<br />
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We are all in this together after all so it is vital that all the services work together to achieve the best result.<br />
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I have always thought of my home as my safe place. The place I can just be me and no longer have to put on a brave face for anyone. That hasn't been the case lately as the last few weeks have been a major challenge with the amount of traffic coming in and out of our home. I have had to keep the "brave face" welded on, the smile on my face struggles to come naturally now and feels forced and I feel invaded. I want to batten down the hatches and put up signs on the front and back doors saying "Enter at your own Risk" and that the "Those of a sensitive disposition should turn around and leave as swearing takes place here" or even "Don't poke the bear, she bites"!!!<br />
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That is why, these days you are more often likely to find me in the house when no one else is there, with no TV or radio on enjoying the sound of silence. I never thought I would say this but honestly it is the most amazing sound ever!</div>
Lyndylouhttp://www.blogger.com/profile/18133867788700520182noreply@blogger.com4tag:blogger.com,1999:blog-610184634972072534.post-3420011926297120242016-01-14T22:37:00.000+00:002016-01-14T22:37:15.978+00:00I'm going down, I'm yelling timber!<div dir="ltr" style="text-align: left;" trbidi="on">
Life in the McKenzie house is, as usual, a cocktail of everything, on the rocks, with a twist of lime!<br />
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Jack's health has been up and down but his new VNS seems to be working fine. No two days are the same: he can be so very alert and active and the next day he can be sleepy and listless. You just have to roll with it.<br />
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Holly has had her appointment in Edinburgh and the consultant saw a marked deterioration in her hip in the short time she'd had to wait to see him and that was just based on an examination of her leg! The hip by this time had degenerated so badly that he said she requires a hip replacement.<br />
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There were lots of tears but now that she has gotten her head around it, she just wants it to happen....NOW!<br />
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We had booked to go to Disneyland Paris for Christmas and we had asked Holly's friend Georgia to come with us to be the other helper. We were over the moon when she said yes, especially now since Holly was going to have to be in a wheelchair for the whole 5 days in the park. She can walk, just not very far.<br />
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It was really important to us that we went on this holiday without a fleet of carers for Jack but it turned out to not be as magical as we had thought it would be. I blame Disney for this because they have changed the priority card to cover every available disability making sure that they are being politically correct. So the card is no longer based on need, it is based on any disability, even if that is an aching knee which you don't need a stick for but you have a letter saying you need assistance. I know this because we met someone like that!!!<br />
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This meant that families of up to 12 people (that we saw) were being allowed to go on the rides together as they were a family but they wouldn't allow us, who had two wheelchair users, one who could walk a bit, go on any of the wheelchair accessible rides together because as both Holly and Jack had a priority card, they were treated as two separate parties even though we told them we were a family and that Holly could walk a bit just not long distances.<br />
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This, as you can imagine rubbed quite a bit of the magic off of Disney, coupled with the ignorance of other people using the park who thought nothing of stepping over the front of the wheelchairs rather than go around them as well as crowding around the back of them with no respect for personal space and boundaries. There was lots of other things too but it would take <i>way</i> too long to go into just now.<br />
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Despite that, the four of us had such good fun but really we could have been anywhere and I don't think we will ever go back again which saddens me quite a bit....but it really isn't the same now.<br />
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After we got back from Disney, Jack came down with a bug, passed it to Holly who lovingly passed it to me! I rarely get unwell but oh boy this was a horrendous one! I haven't felt that rough in a while!<br />
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Holly and Jack's dad came for a visit just after New Year bringing gifts for the kids. Before he arrived Holly told me that his new car (a Ford Mustang) had arrived and he was getting it on Tuesday. So I asked him about it and I nearly fell away when he told me it cost him £28,000.00. On further discussion it turns out that price is for the basic model and Father of the Year hasn't gone for that one but the sportier version costing a wee bit more!<br />
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I was totally stunned and it's not because it's <i>him</i>. Anyone who knows me, knows that I don't care about his money and even if we were still together paying that amount of money for a car would not sit well with me! BUT when I think about how I struggle financially just to provide Jack and now Holly with the things that they need and how anything they needs costs an arm and a leg because it's a specialist item....the idea of spending that much on something just for myself....well it just blows my mind especially when I think of all the other things I could buy the kids to make life easier with that kind of money!!!<br />
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A week ago we got word that Holly's hip operation is on the 15th February 2016. We knew it wouldn't be long but EEEEKKK!<br />
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So this week has been quite frantic trying to arrange care during that time for Jack who as you know cannot be looked after by just any old person. Luckily he is in respite for a part of that week so it's just getting care arranged for the the days leading up to going into respite that I have to worry about.<br />
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I have also had to order all the little bits of equipment that she will need for afterwards like a grabber, a long handled shoe horn, long handled shower sponge and a sock aid! She has already gotten to grips with the grabber and has used it to steal the glasses off my face and the socks of my feet!<br />
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My stress levels are already quite high at the moment because we are going through the transition with Jack from child services to adult services. As usual it's been a case of lack of communication between the powers that be and it has all been left to the last minute. He is 18 in two months so can no longer attend the respite unit he has attended for the last 15 years and it doesn't look like the adult respite unit will be ready for him by then so I face the scary prospect of no respite at all for an indefinite period.<br />
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Sometimes I totally want to resign as an adult, build a blanket fort with a bed of pillows and hide inside with all my toys and a great big bag of sweeties and refuse to come out!<br />
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Lyndylouhttp://www.blogger.com/profile/18133867788700520182noreply@blogger.com5tag:blogger.com,1999:blog-610184634972072534.post-8909869644558498762015-10-30T14:32:00.000+00:002015-10-30T14:32:41.879+00:00Hello....<div dir="ltr" style="text-align: left;" trbidi="on">
It's been a very long time since I have written in this blog.<br />
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I have missed writing but I have gotten bogged down in this life of mine and sometimes felt that I had nothing to say and the things I have had to say would probably scare you and fear for my sanity!<br />
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The last two years have been such a struggle for me emotionally. It began with Jack having to go onto CPAP at night and dealing with the endless struggles that his disability throws up daily and it continues with the ongoing physical issues that Holly is experiencing.<br />
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Looking after one child who is unable to walk is tough but looking after two, well that's a whole new level of stress.<br />
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Holly can walk, but only short distances before the pain and exhaustion sets in. At times she has had to use a wheelchair and she carries sticks, which is her new normality. Life changes perspective when you are forced to sit in a wheelchair and both of us have struggled with the dynamics of life from that perspective.<br />
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I have watched one child lose the ability to walk, I don't want to watch another go through the same!!!<br />
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Not only is she struggling to just move but at the age of 21, feeling like you have the body of an 80 year old is tough. Add to that is the complete lack of understanding that most people have as many people just assume she is lazy. Along with this new development in her life she is dealing with weight gain due to her lack of mobility so she is self concious which in turn has heightened her anxiety levels and she is a melting pot of stress.<br />
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As you can imagine, that isn't easy to watch either. I want to take it away from her, but I can't and that fills me with a sadness I can't even describe.<br />
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We partly have a diagnosis: degeneration in both hips, severe degeneration in the right hip. She has an appointment in Edinburgh to see an Orthopaedic Surgeon in November so we will have a better picture of what can be done then.<br />
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In the meantime, I am trying to keep my head above water and keep busy busy busy.<br />
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Having 3 dogs helps to get me out and about. The smallest one, Koda, has learnt to steal food and I have now named him the Food Ninja.<br />
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In the last two months he has demolished a packet of polos, half the harvest from my apple tree, a jam sandwich, toast, a tuna mayo sandwich, half a baguette and 3 biscuits! A portion of lasagne was saved in the nick of time and I had to chase him down the hall and rugby tackle him to the ground to grab my other packet of polos before he demolished them too. Luckily he has had no ill affects but his breath was lovely and minty!!!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijiGjUnhgk2NIK0o3X9SsO6njfYCRR8JpEltKLKIKPvEVNwQJV_Vqzjt8Fq0y_QO7o5RkkT48_jHNzbBdhMWpwzf0fON1iV1Mj3hdNYzIRt48gR5hJdsft7RHzFjEbOSAUeLOjEuj8Rgx0/s1600/12141543_10207892907227622_2872774602319961850_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEijiGjUnhgk2NIK0o3X9SsO6njfYCRR8JpEltKLKIKPvEVNwQJV_Vqzjt8Fq0y_QO7o5RkkT48_jHNzbBdhMWpwzf0fON1iV1Mj3hdNYzIRt48gR5hJdsft7RHzFjEbOSAUeLOjEuj8Rgx0/s320/12141543_10207892907227622_2872774602319961850_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The Food Ninja....picture of innocence!</td></tr>
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I have had a wood burning stove and a new fireplace installed in my living room which then prompted me to start stripping the wallpaper off....4 months ago! My living room currently has no wallpaper, no curtains but has a very lovely fire!!!<br />
<br />
That should all change this weekend when the painter and decorator comes to give it a lick of paint and bring it kicking and screaming into a more modern look. Photos of before and after will follow...I promise!<br />
<br />
Jack is now 17 so we are going through the transition from child services to adult services which is making me quite anxious but it has to be done. As of this month, he only has 5 more weekends in the respite unit he has been using since he was 5. Also all his medical needs will have to be transferred which fills me with dread as it means moving back to hospital services in Aberdeen. I know it will be different as it will be not be the children's hospital but I have major trust issues with Aberdeen so I fear it will not be an easy change for me.<br />
<br />
Thankfully Jack has had his Vagul Nerve Stimulator replaced a month ago. The operation was a bit tricky and my boy was up to his usual shenanigans and whilst under anaesthetic his blood pressure dropped to 55/15 and he required 2 shots of adrenaline and water boluses to stabilize him and that was before they had even begun the operation! He then spent the night in intensive care as he required some help with his breathing so they put him on BIPAP to help with that.<br />
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He is slowly bouncing back but I am not sure that I am!<br />
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I have also done a course which has taken up a lot of my time but I have met some lovely people and I hope to keep up with that albeit at a slower pace.<br />
<br />
Lastly my Auntie Marilyn, my mum's sister died which came as a huge shock to everyone as it was totally unexpected. I was completely floored by that and feel like I have lost another part of my mum.<br />
<br />
The funeral was in her home town of York so four of us went down for the funeral. We all went in my car. The only problem with that is I only have 3 seats and space for a wheelchair so I told my dad that if he wanted us all to go in my car, he would need to get a wheelchair that I could clamp in the back as the fourth seat. He said he would.<br />
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True to his word he did and my poor wee sis had the pleasure of the best seat in the car.....not! She couldn't see a damn thing out of the windows and she kept sliding down every time my dad had to break hard, which was a lot, believe me, as I am sure he thought he was a rally driver.<br />
<br />
Brenda (wee sister) and I were amazed that his partner Bunty didn't flinch every time he was hard up another car's bum or if he had to pull back in when it proved not safe to overtake. Meanwhile Brenda and I are were in the back doing starfish impersonations with arms and legs waving!!!<br />
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Once we arrived in York and regaled the family of our adventures, my cousin Nicola told us to follow her car to her house, where we were staying. They were parked at the back of the house and we were parked at the front. My Uncle Alan came out to see Brenda sitting in the wheelchair inside the car and we were sitting chatting with the back door slid open, no seatbelts on when suddenly my dad took off in hot pursuit of my cousin who had just pulled onto the road up ahead.<br />
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I hadn't realised this so one minute I was talking to my uncle, the next I was yelling at my dad as I nearly fell out the car, frantically trying to shut the door and get my seatbelt on and waving like a mad thing at my Uncle who was left standing at the side of the road!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcFK_Zp2mAFUMSCKlzR1ynAzHGxzXSapjTcYU1Fl5joErpi1QD1dlRJWLXUlNhDljwAec38DGTB1Tfj4DudOxQWE5eA99zRMKHk25U8D2zml4M9T7OkRSR_h99n0yDoulBx4PJmA_GQV7-/s1600/12038181_10207702256501473_8250376951169173034_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhcFK_Zp2mAFUMSCKlzR1ynAzHGxzXSapjTcYU1Fl5joErpi1QD1dlRJWLXUlNhDljwAec38DGTB1Tfj4DudOxQWE5eA99zRMKHk25U8D2zml4M9T7OkRSR_h99n0yDoulBx4PJmA_GQV7-/s320/12038181_10207702256501473_8250376951169173034_n.jpg" width="176" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Best seat in the car!!! </td></tr>
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<br />
<br />
It was a riot!!! My sister was totally mortified at having to sit in the wheelchair but I reckon my mum and Auntie Maryl, if they were looking down on us, would have laughed their heads off!<br />
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Lyndylouhttp://www.blogger.com/profile/18133867788700520182noreply@blogger.com3tag:blogger.com,1999:blog-610184634972072534.post-15309625410562196062014-12-31T23:38:00.002+00:002014-12-31T23:38:43.339+00:00Where Did 2014 Go????<div dir="ltr" style="text-align: left;" trbidi="on">
It's Hogmanay here in Scotland. New Year's Eve to everyone else and as it gets closer to the end of the year my only New Year Resolution is to try and blog more, as let's face it, this year has been a bit dire!<br />
<br />
In my defence, I have been struggling.<br />
<br />
I haven't been able to pick myself up since last Christmas when Jack was in hospital and ended up on <a href="http://www.nhlbi.nih.gov/health/health-topics/topics/cpap">CPAP</a>. I had coped with all Jack's horrendous health issues up til then but this one just undid me. He has taken to the CPAP without a problem but for me it was the "straw that broke the camels back". I have struggled to pick myself up this past year and at times feel like I am walking through quick sand.<br />
<br />
Add to that, Holly's illness and it has been hard at times to keep a smile on my face. But I do!<br />
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You know it's bad when you avoid Jack's palliative care nurse cos you know that you will cry if she asks how you are!!<br />
<br />
Winter is a tough time anyway as Jackyboy fights off all the winter bugs so most of October and some of November was a write off as he was ill with a chest infection that would not clear. After 3 lots of antibiotics, he was put on one which I had to give him for 2 weeks whilst keeping him out of direct sunlight. You'd think that would be easy enough in the winter but no. The winter sun liked to stream through my living room window so for two weeks we had to have the curtains closed so that Jack didn't have the side affect of sun burn!! Such fun.....NOT!<br />
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Jack's seizures have also become a worry again so he has been started on a 3rd medicine to try and calm them as they are quite fierce, long lasting and he likes to not breathe during them! Nothing like keeping me on my toes.<br />
<br />
To add to the fun, Jack is having more episodes during which he just doesn't breathe whilst asleep during the day now too and the soft collar which the hospital gave me is no longer doing it's job as it isn't deep enough to keep his head in the right position to keep his airway clear. The Physio gave me some more but they were the same size so I think I am going to have to get creative and come up with my own version.<br />
<br />
BUT.....on the plus side, despite <i>all that,</i> my boy has gotten so tall and he has filled out! That boy has major muscles on the upper half of his body. It's all that rolling around on the floor and lifting himself up into a kneeling position and the wee monkey is even attempting to crawl! He has astounded everyone with his ability to bounce back, no matter what life throws at him.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1JA7g2hwA2e-SgNEsuksnN9hRxK0UvTkjxeLJFlxs4fnIHzC99VIQxctcL_oH1bEw4tWmR26knhGr9rSnHsp0qLKdEvYwLJfuliYMO8-jc2KUu39ILhE2GDfKIUU-a9oFReJBGW1cM5_d/s1600/1525102_718775848195423_681719556743893171_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi1JA7g2hwA2e-SgNEsuksnN9hRxK0UvTkjxeLJFlxs4fnIHzC99VIQxctcL_oH1bEw4tWmR26knhGr9rSnHsp0qLKdEvYwLJfuliYMO8-jc2KUu39ILhE2GDfKIUU-a9oFReJBGW1cM5_d/s1600/1525102_718775848195423_681719556743893171_n.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Holly and Jack having a moment</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrottyCcnxKOqOtYrboN9HWIJzRLgCJGPPd6yiPQnlq_8VEc-294cT8_kaDsvmvcCmOBrt66h7QDNGmfMIfjauWwpSTue9jqcAKoIuESiMuc71MuOpAMLETQTK0OU9qED8cK6bJKIKMAqr/s1600/10584038_10154483443935553_2265651708978716168_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrottyCcnxKOqOtYrboN9HWIJzRLgCJGPPd6yiPQnlq_8VEc-294cT8_kaDsvmvcCmOBrt66h7QDNGmfMIfjauWwpSTue9jqcAKoIuESiMuc71MuOpAMLETQTK0OU9qED8cK6bJKIKMAqr/s1600/10584038_10154483443935553_2265651708978716168_n.jpg" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">With my girlie at the zoo on a Rachel House day out</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisjVz0-4m1RqRpID3qU8qPs9iJhinRaOQj83bijv5gdFAb4eCpTWIX9mFtyr6Tvpq6uVdzzVEkUl7HB8fMmzisaEYFv5Vu56WsM42n8wYc4J9EVTkwWVMs5srZyzMWEKTTzpqG9Pq7yAaM/s1600/10603517_10154483444680553_6479500993434878489_n+(1).jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEisjVz0-4m1RqRpID3qU8qPs9iJhinRaOQj83bijv5gdFAb4eCpTWIX9mFtyr6Tvpq6uVdzzVEkUl7HB8fMmzisaEYFv5Vu56WsM42n8wYc4J9EVTkwWVMs5srZyzMWEKTTzpqG9Pq7yAaM/s1600/10603517_10154483444680553_6479500993434878489_n+(1).jpg" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">and with my boy</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHtNvrIjm5T5bPX0udp9Q6dmjKhNXeVkv3erv7rUvwUEz7pcSqfVj-tpdqSmWz9Ho9-VBfZjnXyOCunnf4JwsVprsldAgcsm61wO66i7RM8GL4W8W3bUCLreJAPmdgbURufw65jh7XCWsf/s1600/10704204_757626190977055_7882568388418733198_o.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHtNvrIjm5T5bPX0udp9Q6dmjKhNXeVkv3erv7rUvwUEz7pcSqfVj-tpdqSmWz9Ho9-VBfZjnXyOCunnf4JwsVprsldAgcsm61wO66i7RM8GL4W8W3bUCLreJAPmdgbURufw65jh7XCWsf/s1600/10704204_757626190977055_7882568388418733198_o.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jack showing just how much balance he has...check out the muscles!</td></tr>
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<br />
Just tonight, I was wiping his mouth and he took the cloth from me and tried to do it himself! Holly and I couldn't stop smiling and then later when I was cleaning his mouth out using mouthwash and a toothbrush, he reached up and took it from me moving the toothbrush around his mouth himself!!!<br />
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My heart just melts every time that gorgeous boy of mine shows an interest in helping me. It might only be fleeting but I hug it to me and store it away in my heart to sustain me during the harder times.<br />
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We have also set the ball in motion re <a href="http://www.publicguardian-scotland.gov.uk/guardianship-orders">Guardianship</a> of Jack. Now that he is 16 and classed as an adult, in order to make decisions on his behalf I need to apply for guardianship. Hopefully it will all be done and dusted by his 17th birthday and that will be another stress out of the way.<br />
<br />
In October I applied to get on a course as an assessor for <a href="http://www.sqa.org.uk/sqa/2.html">Scottish Vocational Qualifications</a> where I have to put two unpaid carers through their SVQ in Social and Health. Also connected with that, I had a trip to Glasgow to attend the award ceremony where the Moray SVQ Centre in partnership with Quarriers Carers Support Group won two awards for their work putting unpaid carers like myself through that qualification. Since I was one of the first carers to get their award and subsequently the first carer to get on the Assessors Course, I was invited along!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3MDJ2BWMM5LAO4XhZdErnAEY8L91hLIba7dqyiRdwRVwjH6Z5FG-9JIYCkx9badoiyAnGwtLJd0XPLeyUCeUV7o43GMlvRNdRXd4Qf66nAJyH5aC4aqRyv62qwxVmR8mScYFzE9EZbG1G/s1600/1377066_761994580540216_6811169273416082036_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg3MDJ2BWMM5LAO4XhZdErnAEY8L91hLIba7dqyiRdwRVwjH6Z5FG-9JIYCkx9badoiyAnGwtLJd0XPLeyUCeUV7o43GMlvRNdRXd4Qf66nAJyH5aC4aqRyv62qwxVmR8mScYFzE9EZbG1G/s1600/1377066_761994580540216_6811169273416082036_n.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My pumpkin for Halloween</td></tr>
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It was so much fun. I even wore a dress... gasp shock horror! The presenter of the ceremony was <a href="http://www.bbc.co.uk/programmes/profiles/3VVG3J1RmNzMCk8gJcMB9L3/kaye-adams">Kaye Adams</a> from the TV show Loose Women and she took a real shine to my shoes bringing them to the attention of everyone in the room! So when we won the award for Innovation my shoes got centre stage much to Kaye's delight. Later I had my photo taken with her but instead of standing next to me, she got down on her hands and knees saying "I bow to the shoes"! She was so down to earth and such a laugh. That was the highlight of the evening and the cocktails at The Corinthian was a close second. I know how to party ya know!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHHytg9cz5hQmwN322nbcDg__PfYG5ipyFpgELm-IaTpT2VU237cxxl8hpl_8U9rDX9JHng1lS2BS2dohE8BsopTeu7DV3l2NqTwwU-7buOgWZzQziRIkhi8JrcLzu6-oCVw6ah4IgH90P/s1600/10659089_10205167865103272_604733593822134996_o.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiHHytg9cz5hQmwN322nbcDg__PfYG5ipyFpgELm-IaTpT2VU237cxxl8hpl_8U9rDX9JHng1lS2BS2dohE8BsopTeu7DV3l2NqTwwU-7buOgWZzQziRIkhi8JrcLzu6-oCVw6ah4IgH90P/s1600/10659089_10205167865103272_604733593822134996_o.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My red shoes!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCqt1OlXMgiBgoQkkA3VEDfcpdd_upRVxoH_DovdYePS6wHAOsCwUwJMHAG0l4Kx9Se_zzPnSUKaq4PG6n4GBx0f8IXSJQIctJTb_v9yXp5f0UijfYybPljzS3JbhYmgd8aQlGpT36mRUB/s1600/10372750_10205167863383229_2950663826935740590_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCqt1OlXMgiBgoQkkA3VEDfcpdd_upRVxoH_DovdYePS6wHAOsCwUwJMHAG0l4Kx9Se_zzPnSUKaq4PG6n4GBx0f8IXSJQIctJTb_v9yXp5f0UijfYybPljzS3JbhYmgd8aQlGpT36mRUB/s1600/10372750_10205167863383229_2950663826935740590_n.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Kaye Adams bowing to the shoes!!!</td></tr>
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<br />
<br />
The course is hard work, time consuming but also very interesting. There was a moment, about a month in, where I thought "whose bright idea was this???" If it wasn't for my sister, who has moved back home, helping out with Jack I would have fallen by the wayside long before now.<br />
<br />
I have met so many interesting people through this course and I am really enjoying helping my candidates who have already realised that I am a bit mad! But fun with it!<br />
<br />
December was such a busy month that it passed in a blur with Jack having 3 hospital appointments in one week! What is that about eh?<br />
<br />
Christmas was quiet but lovely. Jack partied til 11.30pm even though in the run up to the day he was alseep by 6pm every night. We also went to the panto at Eden Court in Inverness and we got moved to the House Box as Jack's view would have been restricted in the seats we had. They were so lovely and we very much appreciated it.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhm9gMmF7XuO0_BjfJka1hpOSa1uis1hCkcQbfL_78tBY7VodpkYwAWH05huHQDXGfGrl9qunMfOEuSJcXjQSy590rS-mrYER6G8LNHqRv490pSw6WcR6eOynllSDOyqf6_AdZ39Ddod79b/s1600/10620533_790383017701372_6529784331290199088_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhm9gMmF7XuO0_BjfJka1hpOSa1uis1hCkcQbfL_78tBY7VodpkYwAWH05huHQDXGfGrl9qunMfOEuSJcXjQSy590rS-mrYER6G8LNHqRv490pSw6WcR6eOynllSDOyqf6_AdZ39Ddod79b/s1600/10620533_790383017701372_6529784331290199088_n.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Christmas mugs...you just gotta have them</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2mO2bdFKt5yrDKrCCHt80tdarQag7RpBTmTwFD8XZccQ09EwYCeIruDFN9t43n0t538nmf1rwMxf8D5Nfvz78Labjm1ilLVzj54gUethgZgsCR8TaPw2l_WEydreLkf_0ikapFGkrHmIk/s1600/10898163_794053654000975_8445880987536809568_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2mO2bdFKt5yrDKrCCHt80tdarQag7RpBTmTwFD8XZccQ09EwYCeIruDFN9t43n0t538nmf1rwMxf8D5Nfvz78Labjm1ilLVzj54gUethgZgsCR8TaPw2l_WEydreLkf_0ikapFGkrHmIk/s1600/10898163_794053654000975_8445880987536809568_n.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Holly helping Jack to open his presents</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjLOtB1XO6zE-xj9FW3b65o1xJXRmOOIau8p8mZqHAjQXkEfWuk1yQmWTd-IHc4fglECZR8aNJp1lzroRoekpHiz63xjmKQPZrzJJWQyrRNMuD2o7qQjBp8h_0y5hXzlhIRWZOfRw0AHng/s1600/10897753_793499184056422_171210245070436754_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjLOtB1XO6zE-xj9FW3b65o1xJXRmOOIau8p8mZqHAjQXkEfWuk1yQmWTd-IHc4fglECZR8aNJp1lzroRoekpHiz63xjmKQPZrzJJWQyrRNMuD2o7qQjBp8h_0y5hXzlhIRWZOfRw0AHng/s1600/10897753_793499184056422_171210245070436754_n.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sporting his Batman onesie...a christmas present from his Aunti Kathleen</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgj3a9W-ewjFwYVzQN44-OR9DZGW-wSSRapzdg_Iroj0raqxTb03TPg2PKmpxY1aJ38asdwAd0ltvXvaqectxhF1_m2uk7TWnBlA9tn18iU_rqcUtQZziDUj3-USIBV6BrOxDZxji4JiTzE/s1600/10888967_794012287338445_1701011847233131658_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgj3a9W-ewjFwYVzQN44-OR9DZGW-wSSRapzdg_Iroj0raqxTb03TPg2PKmpxY1aJ38asdwAd0ltvXvaqectxhF1_m2uk7TWnBlA9tn18iU_rqcUtQZziDUj3-USIBV6BrOxDZxji4JiTzE/s1600/10888967_794012287338445_1701011847233131658_n.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Pirates of the Caribbean spoke guards to pimp his wheelchair</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiP6zrguaVKCiYlmajuFRPPzdr18YSYxLhRxX-lUK9FdQmV84JAPb-C__ewnY_k5fNGH-pACnxLKgF1cQKB_AedVS8KuGUzGpd1idS5UKDYfO1qlnK5WFnRzZayXiNK-Fe8JBAdw-AN1X78/s1600/10155242_794012300671777_6901694589431563541_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiP6zrguaVKCiYlmajuFRPPzdr18YSYxLhRxX-lUK9FdQmV84JAPb-C__ewnY_k5fNGH-pACnxLKgF1cQKB_AedVS8KuGUzGpd1idS5UKDYfO1qlnK5WFnRzZayXiNK-Fe8JBAdw-AN1X78/s1600/10155242_794012300671777_6901694589431563541_n.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Personalised Wheelchair number plate.....what a cool dude!</td></tr>
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<br />
As 2015 creeps closer Holly and I have decided to take the bull by the horns and take Jack to Disneyland Paris for Christmas next year. He got loads of money for his birthday and the last two Christmases so we may as well spend it on something that we will always remember.<br />
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So as 2015 draws to a close, I want to wish you all a very healthy and happy New Year. I hope you continue to share this roller coaster ride with us and I look forward to sharing more of my crazy world in 2015.<br />
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Lyndylouhttp://www.blogger.com/profile/18133867788700520182noreply@blogger.com6tag:blogger.com,1999:blog-610184634972072534.post-58470778862491387352014-08-08T23:10:00.003+01:002014-08-08T23:10:50.397+01:00Hello? Anybody out there.<div dir="ltr" style="text-align: left;" trbidi="on">
It has been MONTHS since I last blogged!<br />
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Not because I didn't have anything to say, in fact I had so much rattling around inside my brain but not enough hours in the day to write it all down and make sense of it all.<br />
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Firstly, after a shaky start to the year, with a few hospital visits and an exciting ambulance ride, Jack is keeping well. He had an overnight sleep study in May and his Cpap machine is doing it's job so it didn't require any tweaking. Phew! After a 2 year wait, he finally got a wheelchair with a moulded seat so he is much more settled in his chair. <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilRr0idS_BWGk_mi8RsDloI6OB2E6kZDGWmeTMt94ZDP5CoDMvwPrcwzq9PnwE1GloUySVSCiKzfJWSaXw74fD3NXzoVbL_gd3N4RzZOjja509DWcHfCRB8OcrAtbK6bs_1NH4yCsoIh_S/s1600/20140326_161452.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilRr0idS_BWGk_mi8RsDloI6OB2E6kZDGWmeTMt94ZDP5CoDMvwPrcwzq9PnwE1GloUySVSCiKzfJWSaXw74fD3NXzoVbL_gd3N4RzZOjja509DWcHfCRB8OcrAtbK6bs_1NH4yCsoIh_S/s1600/20140326_161452.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jack's new wheels</td></tr>
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His bedroom has had a total makeover but that is definitely a "stand alone" blog post for later. I promise it will be worth it.<br />
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Holly, on the other hand, hasn't been so well. She was diagnosed with Hyper Mobility and Arthritis and over the last two months has been struggling to walk, so much so that she has had to use a wheelchair over the last three weeks. We managed to get an emergency appointment this week so off we went to Aberdeen. Ironically this was the first day she was able to walk so the consultant didn't see her at her worst. <br />
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I wish he had because he looked totally bored and uninterested throughout the appointment and berated her by saying "the whole point of getting the physio to see you was so that you could follow a programme of exercises" and when she told him that she hurt herself while doing them he said "<em>well,</em> you <em>do</em> have hyper mobility!". Aaaaaaahhhhh!!!<br />
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At this point I wanted to scream because how in hell is she to do exercises if the slightest thing can cripple her??? It doesn't make sense to me that in trying to build up the muscles she has to go through even more hell for very little gain. I asked him if she had Hyper Mobility Syndrome and he patronisingly told me that Hyper Mobility was a spectrum but wouldn't be drawn on where in the spectrum she was. He grudgingly took bloods and then we left. I can see there is going to be a battle on our hands to get proper answers and it doesn't look like he is the one to be giving them!<br />
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There are times I wonder.....what bloody next??? <br />
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While all this has been going on, I have moved Holly out of Halls at Uni and moved her and her friend into a flat. Her friend Georgia is staying there at the moment and Holly will join her at the start of September. Such is my tiredness these day that I enlisted the help of Father of the Year on one of his rare visits home, to help us pack up Holly's room.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpjIQNFKN5qQaTXnEWpYp1BKr9i7bDCZTlxq47KFTkeQqefJvv5eW6cotmo93ZsvH1RMRdO_NLQp1V3vdUTf8I6xLsDqtJuYBMYUB3gcq8wpQuKtJdWRjVAMDq_AiFupOu3rDSsy7th1fr/s1600/20140712_155141.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhpjIQNFKN5qQaTXnEWpYp1BKr9i7bDCZTlxq47KFTkeQqefJvv5eW6cotmo93ZsvH1RMRdO_NLQp1V3vdUTf8I6xLsDqtJuYBMYUB3gcq8wpQuKtJdWRjVAMDq_AiFupOu3rDSsy7th1fr/s1600/20140712_155141.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Holly and Georgia outside their flat</td></tr>
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Oh My God......I deserve a medal....a whole day in his company and I was like a coiled up spring but I soldiered on! He did nothing but moan about all his aches and pains and at times I had to bite my tongue to stop myself from snarling at him. Holly had the flu so her tolerance of him was at an all time low. I tell you it was a <em>long</em> day believe me! <br />
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Earlier in the week, he'd emailed to ask if he could come and see Jack and being the hilarious but devious person I am I said he could and that if he wanted, he could help me put Jack to bed.<br />
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Suffice to say FOTY was rather the worse for wear after the hour and a half it took to get Jack into bed. Normally I just give Jackyboy a quick wash at bedtimes but FOTY wasn't getting off that light... so we showered him. There was lots of huffing and puffing, sweating and moans about his aching back by the time we were done. Holly and I were trying our hardest not to laugh! I know, I know, totally mean right? NOT!!!! Once we were done he commented "you do good you know". <br />
Aww, geeze, really???<br />
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I couldn't hide my mirth later on that night when Holly hit him in the face with a ball, knocking his glasses off and upsetting him big style! Cue me helpless with glee on the chair. Ah Karma is a beautiful thing.<br />
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A girl has to get her kicks somehow!<br />
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It has been a busy year so far. Jack turned 16, Holly and I stayed in a Gypsy Caravan for her 20th birthday, we said goodbye to another student, Tori, who introduced us to the most un politically correct game ever (Cards Against Humanity) but it was so much fun!! I bought Jack a new bike because he was no longer able to go on his old one and it will definitely get me fit cos I am the one doing all the pedalling.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixSMUQ5y_VDCKmsG-hGTwe1OeAcFAATFUgnQq0A2eAEUhTQbM7nyamOf-_kD4hmrztxhHCHD48tiUNnLTRxpJXbZcjsBUoUpOAixNQakBjO3ujVjQnmxMqn1lQXsLIICTiVUBpuodQLdjW/s1600/20140502_160920.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEixSMUQ5y_VDCKmsG-hGTwe1OeAcFAATFUgnQq0A2eAEUhTQbM7nyamOf-_kD4hmrztxhHCHD48tiUNnLTRxpJXbZcjsBUoUpOAixNQakBjO3ujVjQnmxMqn1lQXsLIICTiVUBpuodQLdjW/s1600/20140502_160920.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jack and I on the bike</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_dgXta-F0Q3WaFhE8UQYBRWre7zqveh-xz0zeLiVYffmbgrEDtX07i5T8IS-aJzyO_oRbsWiT7p2e9qHrUx3IYPANdavK8G23CwogqkKONKg7OJJIof2Nr9o9u0H_vopGZ09cRLrnMMzw/s1600/1939950_10203392357236685_903812238_o.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh_dgXta-F0Q3WaFhE8UQYBRWre7zqveh-xz0zeLiVYffmbgrEDtX07i5T8IS-aJzyO_oRbsWiT7p2e9qHrUx3IYPANdavK8G23CwogqkKONKg7OJJIof2Nr9o9u0H_vopGZ09cRLrnMMzw/s1600/1939950_10203392357236685_903812238_o.jpg" height="238" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jack's birthday with my mad friend Kathy dressed like a pirate</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFxMe_1DwKZ4hBv-jP18m5ft3k-FFx6_mTKzQk6oB9gE9Ktj_i3bbI2QZdmgP8ZPnT7qZU26ci2UOa0u2xDbGQojQJJ3c405M3XS2dr0npqF9IaJzKi8gLmA4EudJf1vLQBeHlLltrtsno/s1600/1609581_10203392349516492_1824287677_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFxMe_1DwKZ4hBv-jP18m5ft3k-FFx6_mTKzQk6oB9gE9Ktj_i3bbI2QZdmgP8ZPnT7qZU26ci2UOa0u2xDbGQojQJJ3c405M3XS2dr0npqF9IaJzKi8gLmA4EudJf1vLQBeHlLltrtsno/s1600/1609581_10203392349516492_1824287677_n.jpg" height="238" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The pirate ship cake I made</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4jU7jqQMVntW98XoqsGGQP3wvHpyfONAOcbK1mc9Vj4xIhPHvJBzLBSB9uJkbjL52Md-vfrUIwnreJ93HH3ZZfxyD9K_p9bwd4oa6cmhaGE3dF67ifjUkFp9mVGxRtDHrE8_araAa-0YK/s1600/10354738_10204127485494432_243529710364990576_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg4jU7jqQMVntW98XoqsGGQP3wvHpyfONAOcbK1mc9Vj4xIhPHvJBzLBSB9uJkbjL52Md-vfrUIwnreJ93HH3ZZfxyD9K_p9bwd4oa6cmhaGE3dF67ifjUkFp9mVGxRtDHrE8_araAa-0YK/s1600/10354738_10204127485494432_243529710364990576_n.jpg" height="238" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The Gypsy Caravan</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6uh5Q-CrpiO6YtBnVuJzKnNDB0FsdiBaFjVR5W7t4Hanlk1-JScCIIDBkNWEzszH0pSJFc-MYwc2TAaXnuki722sEDZGk-ozZQEZWs5duYmv8CFYrVwnWu-1LfFmFPEslWXKcj_R3YLIl/s1600/10501599_10204127485814440_1893268840775989158_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6uh5Q-CrpiO6YtBnVuJzKnNDB0FsdiBaFjVR5W7t4Hanlk1-JScCIIDBkNWEzszH0pSJFc-MYwc2TAaXnuki722sEDZGk-ozZQEZWs5duYmv8CFYrVwnWu-1LfFmFPEslWXKcj_R3YLIl/s1600/10501599_10204127485814440_1893268840775989158_n.jpg" height="238" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Inside the caravan</td></tr>
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I have been trying to empty my house of all the stuff that I have accumulated over the years but have not had the time or inclination to get rid of. I am about half way there so hopefully by Christmas the house will be a bit more presentable. I need to start decorating because my house is looking a bit shabby now after 12 years and the only way to fund it is by selling some of our old stuff.<br />
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Holly has a secret room leading off of her bedroom and over the years it's been a playroom, a den and now we are making it into a more grown up space where we can be creative. That way she wont leave all those unfinished projects lying around the house and I wont have to get mad when I fall over them! It will be somewhere for me to make things too as I have loads of projects that I have had my eye on but have never had the time to do them. That is going to change so watch this space.<br />
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The garden is still being tackled from last year and finally you can now see that I have a greenhouse at the end of the garden. Just need to empty it and start growing things in it. My garden is full of well established plants but very little flowers so I planted loads of wildflowers at the front and side of the house and they are just starting to flower. They are so pretty and are already starting to attract the bees and butterflies. I am also trying my hand at growing tomatoes, so far, I haven't killed them so that's a start! My friend Kathy has enjoyed laughing at my attempts to garden but you have to start somewhere right?<br />
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Finally after 3 years of fighting, I am getting carers in to help me put Jack to bed so I have been busy training them up. I forgot how tiring that was but it <em>will</em> be worth it. It's very difficult to get used to having so many different people coming into your house. Especially when that is probably the only place where you don't have to pretend on the bad days that everything is ok. <br />
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Only the plus side, it's nice to see a friendly face on those days too.<br />
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To add to the madness we have a new addition to the family...a Sprocker puppy...who is totally mad so fits right in. His name is Koda and he has given us all a reason to smile when things have been extremely tough. He has certainly entertained the other two and there has been lots of mischief in the garden! Poor Koda had a problem with his eyes so had to have eye surgery on both eyes when he was 3 months old and had to wear a cone for 3 weeks!<br />
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Believe me when I tell you that a puppy wearing a cone, catching the back of your legs at great speed is so bloody painful! He nearly brought me to my knees a few times!!! I was so damn glad for him to be rid of the "cone of shame"!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5sR48O7H9tp-blfZ6FKYnUCuCa1Zh1GHAHUv26fukSiFf6OEJc3j4ImDedE_A7FQR0pw7BgWxD4mBkQf4ujMydmdicOMEdFQuLt0wabI5xcqbF6GF_7RrAii4_Es6S9mrKbLbfx_LwArA/s1600/10502460_10204114962461364_7486418680983770585_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5sR48O7H9tp-blfZ6FKYnUCuCa1Zh1GHAHUv26fukSiFf6OEJc3j4ImDedE_A7FQR0pw7BgWxD4mBkQf4ujMydmdicOMEdFQuLt0wabI5xcqbF6GF_7RrAii4_Es6S9mrKbLbfx_LwArA/s1600/10502460_10204114962461364_7486418680983770585_n.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Koda just after his operation<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgByMgAkHvNZaRTUNTmKhFWOJnkftM0_aiRMAiTphevv71OsN0CkAv10LQBRvsko_z53KeUVKyobtQN0wsbI5nqOL0R8ZhJszheASpX0WahaNqYjH7GI__l33_dF2VXyysbq-_dabip23QX/s1600/20140619_231804.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgByMgAkHvNZaRTUNTmKhFWOJnkftM0_aiRMAiTphevv71OsN0CkAv10LQBRvsko_z53KeUVKyobtQN0wsbI5nqOL0R8ZhJszheASpX0WahaNqYjH7GI__l33_dF2VXyysbq-_dabip23QX/s1600/20140619_231804.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cuddling up to Loki</td></tr>
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<tr><td class="tr-caption" style="text-align: center;">So cute</td></tr>
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The school summer holidays are nearly over. We have a week to go before the kids go back to school. Jack will have been off 7 weeks by then as he was ill the last week of school. I do not know how I survive these holidays but I do! This one has been doubly tough because of the hard time Holly has been having with her own mobility<br />
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No rest for the wicked they say...............yep that's me, a total badass!!!<br />
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Lyndylouhttp://www.blogger.com/profile/18133867788700520182noreply@blogger.com15tag:blogger.com,1999:blog-610184634972072534.post-63377654860274015862014-01-15T09:27:00.003+00:002014-01-15T09:34:28.599+00:00You only get what you can cope with..........what a crock of shit!<div dir="ltr" style="text-align: left;" trbidi="on">
Since my last post, my life got a little crazier, surprisingly...NOT!<br />
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Jack and I were due in Rachel House for a few days from the 18th November. He had been unwell previously, was still a bit chesty and had just finished another dose of antibiotics.<br />
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The first night, I was called by the hospice staff as he wasn't breathing very well.<br />
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I came downstairs thinking it was more of his noisy obstructive breathing but no, he wasn't breathing much at all and not even trying to, which was ten times more scary. His lips and skin were a dusky colour which meant he wasn't getting enough oxygen. We changed his position in the bed a couple of times to open up his airway and roused him from sleep and he started to take deeper breaths therefore improving his colour. Phew!<br />
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Once he was a better colour I went back to bed and the hospice staff assured me they would sit by his bedside the rest of the night.<br />
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The next day, all seemed well until around 11.30 am when he had another episode of not breathing and looking dusky. His neck collar wasn't doing anything to help so the hospice doctor was bleeped to come and have a look at him.<br />
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Meanwhile, Holly and her friend Georgia were on the bus from Edinburgh coming for a visit so I had to nip out and pick them up. When we arrived back the doctor had been to see Jack and was coming back for a chat with me. It was decided to give the hospital a ring, as Jack's chest sounded clear and there seemed to be no reason for these episodes. He was back shortly to say they were sending an ambulance for Jack.<br />
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As I was the only one who could drive, Holly went in the ambulance with Jack and Georgia and I followed behind with all Jack's stuff.<br />
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We spent 5 hours in A & E and were eventually transferred to the Respiratory Ward just after 8 pm. Jack seemed to go a bit downhill when we reached the hospital, having seizures and producing lots of saliva which he was then swallowing! His chest was getting quite rattly so I had a feeling he wasn't going to have a great night.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7NB-bFXbsyh1IEA9pxg7Vztq01hVQXkUw0_mw64eCtudo9LygDCoyUanzmbC3OZR-9DXUAADydi7Y7Y_EqyWkKUwoLar6U6MrIqWSWWHq0gONeKYrY4EHLedqUXt65xuzhSxvS1kqEuO_/s1600/get-attachment+%252872%2529.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh7NB-bFXbsyh1IEA9pxg7Vztq01hVQXkUw0_mw64eCtudo9LygDCoyUanzmbC3OZR-9DXUAADydi7Y7Y_EqyWkKUwoLar6U6MrIqWSWWHq0gONeKYrY4EHLedqUXt65xuzhSxvS1kqEuO_/s320/get-attachment+%252872%2529.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This photo says it all</td></tr>
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The next day when we arrived back at the hospital they had put an airway into his nose as he was having such bad episodes of obstructive breathing. He also had two bugs in his chest...he really is a greedy boy!<br />
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It was a hard two weeks, during which it was decided that he would need the NP airway in on a permanent basis. Holly and I were quite distraught about this as it wasn't the most discreet looking thing and it spread out from his nose across his cheeks, covering most of his beautiful face.<br />
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Jack, though, had other ideas! Due to the bugs in his chest, it kept getting blocked and required regular changing which turned out to be an ordeal for all involved as he fought them and even learned to use his tongue to block it. My boy is so clever! As if that wasn't enough to contend with they could only get it down one nostril as the other one had a little kink in it making it extremely difficult to pass a tube down.<br />
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At the end of the two weeks, I told the consultant that this really wasn't working and could we go onto Plan B, whatever that was but I had a fair idea.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj60x-PJj_5IoVrTNk2mVV-AhPv7mk-_xXA7fCJqPchzNWrJlWgM-1DAg04FYFK9OBT7hidBNJ_QzuHpC8gKLZpt9QWM1ZX0LxOXUBIohp0EKnCN928oC7G_eEtvTcTSq8K9xyoEzQC7A1w/s1600/get-attachment+(67).jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj60x-PJj_5IoVrTNk2mVV-AhPv7mk-_xXA7fCJqPchzNWrJlWgM-1DAg04FYFK9OBT7hidBNJ_QzuHpC8gKLZpt9QWM1ZX0LxOXUBIohp0EKnCN928oC7G_eEtvTcTSq8K9xyoEzQC7A1w/s320/get-attachment+(67).jpg" width="238" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Trying on my new hat....he was not amused! He reminded me of the Grinch! So cute</td></tr>
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We had a meeting shortly after. Plan B was <a href="http://www.nhlbi.nih.gov/health/health-topics/topics/cpap/">CPAP</a> which I kind of expected and about an hour later, we tried it while he was quite calm and awake. He didn't even struggle, which nearly broke my heart and once the mask was in place, machine switched on, he just rolled towards me for reassurance and I hugged him. He tolerated it for 30 mins lying in my arms. The respiratory nurse, Linda, was so impressed with him, he was such a star. Apparently it can take months for kids to get used to it.<br />
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That's the way with Jack, he knows when he needs something, so he doesn't fight it.<br />
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The best bit of all was he only has to use it at night so less invasive than the NP airway. The consultant said that it would take a week for Jack to get used to the cpap machine and for me to be trained. So my goal was a week from that day and we weren't going to stay a day longer!<br />
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After 3 weeks in hospital we managed to get home. Jack was very tired so I kept him off school. The first week home was a bit hectic with lots of phone calls, appointments etc. We popped into school for a morning and he was able to take part in his play, much to his disgust, which made Holly and I fall about laughing!<br />
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Unfortunately we missed out on respite and our other dates at Rachel House but to be honest, I felt home was the best place for us.<br />
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I managed to get out for the day with Tori (my new student) and although the weather was pretty dire, we managed to visit the Highland Wildlife Park where we had a stand off with two Bison who stood in the middle of the road and were refusing to budge! Intimidating but hilarious.<br />
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That same night, after we got home, Kathy surprised me with a visit. I had no idea she and the kids were coming but it made me cry! Holly arrived home in the early hours of the Sunday morning too, so my weekend was complete.<br />
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Christmas was hectic. The house looked like a winter wonderland by the time Holly, Tori and I were finished!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3Nm9oUZIpKQuVhyphenhyphenzLrYeR5bHWGJ10p8guOxIb1VYCfL0FRV4dDcfmmAXQym6ArrRdQMV4l5JXBLmCNVgICsLrZnztyS_tCyQxUCSaGBym2Wqent1rlCJ4uwyrNJ2ptUGel4rhQPIhgnYC/s1600/get-attachment+(79).jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3Nm9oUZIpKQuVhyphenhyphenzLrYeR5bHWGJ10p8guOxIb1VYCfL0FRV4dDcfmmAXQym6ArrRdQMV4l5JXBLmCNVgICsLrZnztyS_tCyQxUCSaGBym2Wqent1rlCJ4uwyrNJ2ptUGel4rhQPIhgnYC/s320/get-attachment+(79).jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jack seems to like the tree</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPImOG5mlY_grH5QJmjz6RvQ_CNEFLaleNaq7p7oIjT6q_OrKr7YwDmYwmf2_k1UPpmnFDD0G-f6V-3CZvJoUlVDj2oZOKD1goy6Agx6eD9dLaaBfJYEMK5rFEj_6ktMBg3SgBrmt-Ln8M/s1600/get-attachment+(76).jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiPImOG5mlY_grH5QJmjz6RvQ_CNEFLaleNaq7p7oIjT6q_OrKr7YwDmYwmf2_k1UPpmnFDD0G-f6V-3CZvJoUlVDj2oZOKD1goy6Agx6eD9dLaaBfJYEMK5rFEj_6ktMBg3SgBrmt-Ln8M/s320/get-attachment+(76).jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Even the dogs were decorated!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVmYuvXzhX-IAVhH79yDhpACN36iQeGq8QjIJomxQ79edTjqwNUU4x3YSz3ExnyKPT83S8fdrjlnZ4mC3vyyDl6mNn4KGE0Y0nwYOjjrTT29vugqbpLKxJVfiUTI5uO7biSpqRfn39rF0Z/s1600/get-attachment+(75).jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjVmYuvXzhX-IAVhH79yDhpACN36iQeGq8QjIJomxQ79edTjqwNUU4x3YSz3ExnyKPT83S8fdrjlnZ4mC3vyyDl6mNn4KGE0Y0nwYOjjrTT29vugqbpLKxJVfiUTI5uO7biSpqRfn39rF0Z/s320/get-attachment+(75).jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Tori decorating Jack's hoist</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJl8GhFG_GX_eP4Q074c8evWsNkK006gbNqGN92uVzQIaJfLhJ1U2StPPX1padqNA7iDrp-AWdr85Xw1bukka1tdVFzFqqZ9_jsTkXdgMpsZ7WEc4XkgkAJeQGc9YEuk0J0dgkPtWDxSEp/s1600/get-attachment+(87).jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJl8GhFG_GX_eP4Q074c8evWsNkK006gbNqGN92uVzQIaJfLhJ1U2StPPX1padqNA7iDrp-AWdr85Xw1bukka1tdVFzFqqZ9_jsTkXdgMpsZ7WEc4XkgkAJeQGc9YEuk0J0dgkPtWDxSEp/s320/get-attachment+(87).jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Holly with her favourite girls</td></tr>
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My dad was coming for Christmas so Holly and I had a baking frenzy on Christmas Eve whilst Marion the carer was in. The two of us haven't baked for years. It was loads of fun. My Dad stayed over for two days and we had such a great time, he is still talking about it today.<br />
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Jack slept through most of Christmas Day but came to life around 5 pm so we grabbed that window of opportunity and there was a chaotic hour of present opening til he got fed up. He got loads of tactile stuff that either had flashing lights, squeaked or just felt nice.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_4F2mc91fRreU4_IArmj-56gwc8cnmM0TZmlmxXhDivaCmXEg_BajnY22Vcv6SRtsjM5FBebaQL04sF3hHk3Empx7i0OPdHDWpQcP3fYtTUS6hVpPif8YrnZAmUJ0KfewMu10vt35VWno/s1600/get-attachment+%252885%2529.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj_4F2mc91fRreU4_IArmj-56gwc8cnmM0TZmlmxXhDivaCmXEg_BajnY22Vcv6SRtsjM5FBebaQL04sF3hHk3Empx7i0OPdHDWpQcP3fYtTUS6hVpPif8YrnZAmUJ0KfewMu10vt35VWno/s320/get-attachment+%252885%2529.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He was just too tired and wanted to be left alone</td></tr>
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Holly got loads of goodies, her favourite being the Alice In Wonderland bag that was made for her by the lovely lady at <a href="https://www.facebook.com/BigDaisyKissBoutique">Big Daisy Kiss Boutique</a>. She has been desperate for one so I thought it would be a lovely surprise.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgo2IAtefKytiYXdBHxGDVvLUPNnQF78rPgJmSFUWheo_uwVMX5BmFT_a33lROIewVGNvrrV0_rBGXuwXNkp0hEhYM2C83SAsreeOtL8WKvYMLkAnQNOhNzXjbDSYFPROY6kiCeFMYRD2wP/s1600/get-attachment+(83).jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgo2IAtefKytiYXdBHxGDVvLUPNnQF78rPgJmSFUWheo_uwVMX5BmFT_a33lROIewVGNvrrV0_rBGXuwXNkp0hEhYM2C83SAsreeOtL8WKvYMLkAnQNOhNzXjbDSYFPROY6kiCeFMYRD2wP/s320/get-attachment+(83).jpg" width="320" /></a></div>
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Speaking of surprises, Holly and her friend Georgia secretly bought me a present and organized friends and family to contribute to the buying of it over a period of 3 months. She managed to get it home as well, all without me seeing it. Her only comment about it was "you know mum, you have some really really good friends and you are well loved, that's all I am going to say!".<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidwY-DA9n1lHhhqTn1jvXBO-X6BsqIgo-Dylr9baPdrV09rcWR9jXcHx0AAYr6JYFdv4WeWsQjxo4U0PB6g7H8_mTFppJgT4bz5Uyzd5SbHb2HIt8hAsYe-PUkAj-RtkPU20c1RKOQmD0m/s1600/get-attachment+(68).jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="238" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEidwY-DA9n1lHhhqTn1jvXBO-X6BsqIgo-Dylr9baPdrV09rcWR9jXcHx0AAYr6JYFdv4WeWsQjxo4U0PB6g7H8_mTFppJgT4bz5Uyzd5SbHb2HIt8hAsYe-PUkAj-RtkPU20c1RKOQmD0m/s320/get-attachment+(68).jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This represents the three of us!</td></tr>
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It's a Jennifer Hogwood original and I just LOVE it!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizTYKFze-zmxje19ALAvTcxayMsmoB3JA0E1HbmHzWRUFc3yYZkdBKL3wOY71xBO85wcZqCPJAxvSuBhpq9ZIu76_4NfTo4YMgm5F3H1Wpi1TeM_BysU_kM-e1VMMOF6D7PJyjuEOZC4mo/s1600/get-attachment+(69).jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEizTYKFze-zmxje19ALAvTcxayMsmoB3JA0E1HbmHzWRUFc3yYZkdBKL3wOY71xBO85wcZqCPJAxvSuBhpq9ZIu76_4NfTo4YMgm5F3H1Wpi1TeM_BysU_kM-e1VMMOF6D7PJyjuEOZC4mo/s320/get-attachment+(69).jpg" width="238" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">He was a happier boy later in the day</td></tr>
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New Year's Eve was a bit eventful. Jack had to have rescue meds after having 4 seizures in 5 minutes so he was totally out of it for the rest of the day. Holly had been unwell since she got home so she took to her bed in the early evening too. It was a crap day all round!<br />
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Now though it is 2014 and I am looking ahead to a new year.<br />
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This year Holly will be 20 and Jack will be 16...eek! Surely I am not old enough to have kiddies that age? Where has the time gone?<br />
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Jack's National Insurance number came in this week which means he can now officially get a job. Holly and I had such a laugh coming up with the ideal job for him.<br />
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We both think that he would be ideal as a tester of toys! He is so rough with his; dropping them, rolling on them, bursting them etc so any toy that could withstand the "Jack treatment" would pass the grade! He would be brilliant at it! Hee hee hee.<br />
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Holly also suggested he would be great as a tester of special needs equipment cos I am sure they test most equipment with someone who just lies very still! Jack, who wriggles about all the time seriously puts his equipment through a punishing regime on a daily basis!<br />
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So it looks like my boy might have to start earning his keep when times get hard! Now that would be something eh?<br />
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Lyndylouhttp://www.blogger.com/profile/18133867788700520182noreply@blogger.com13tag:blogger.com,1999:blog-610184634972072534.post-78789719662018402362013-11-09T00:21:00.001+00:002013-11-09T00:21:16.580+00:00Too tired to care<div dir="ltr" style="text-align: left;" trbidi="on">
I am tired.<br />
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I am struggling.<br />
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I am overwhelmed.<br />
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I feel inadequate.<br />
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I am hiding.<br />
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I am struggling to get motivated.<br />
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I struggle to get out of bed.<br />
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I struggle to smile.<br />
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Little things stress me out.<br />
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I can be tearful at the drop of a hat.<br />
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I feel isolated.<br />
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All of the above statements are true at the moment.<br />
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Do you ever feel like everyone wants a piece of you and if you give them what they need you are going to shatter into a million tiny pieces?<br />
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I don't understand it. But I know what it is.<br />
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Loss.<br />
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No one has to have died for a person to experience loss.<br />
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I live with it daily. This roller coaster life that I live with my very precious and sweet child, who has more health issues than you could shake a stick at, is tough.<br />
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People have told me that I have a choice! A choice to what I ask? To care for him, they reply.<br />
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These are two types of people who say this: professionals and people who have not an ounce of empathy!<br />
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I do not care for him out of duty. What most people just don't get is how much I love and adore him. Jack has the right to life in a family environment in the care of people who love him surely?<br />
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It would be like me suggesting to a mother of a very healthy, naughty child that really, he would be better off in care....can you imagine the furor that would cause? Not to mention the offense she would take!<br />
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Jack, Holly and I have a bond that is so damn strong. I have no idea what the future holds for Jack but with 3 significant episodes of deterioration in his health over the past 4 years, I can only imagine what is next.<br />
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I am not selfless. I have not put my life on hold for him. I don't feel that he holds me back or stops me doing things.<br />
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Actually it's the other way around. I often feel that I don't give him enough opportunities and that our world has become so small. I am only one person so going places with him requires help as I can no longer lift him alone not to mention the emotional and physical toll it takes on me.<br />
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Planning a day out or a short trip away is a major operation. Jack's entourage would make a celebrity jealous!<br />
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Then there is the problem of changing him when we are out and about. Disabled toilets are a joke if you are unable to move your body yourself so the only alternative is to change him on a dirty floor in said toilets but now he is even too big for that!<br />
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Visiting friends is a no no cos most of them have steps up to their house and it costs a fortune to buy portable ramps. In fact anything specifically for the "disabled" gives companies carte blanche to charge 3 times as much for it!<br />
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This is not a pity party, far from it. I just need to get this out otherwise it is going to erupt out of me like a volcano!!!<br />
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I very rarely tell it like it is cos when I do, people say the most stupid things!!!<br />
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A friend of a friend, after hearing how ill Jack had been, said " you just don't have a life do you?" Resisting the urge to smack her one, I replied " if I didn't have a life then I would be dead!"<br />
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Just because my life is so damn different to yours doesn't make it any less valuable!<br />
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I do what I do, I get by, I ride the storm. I am strong but I am expected to be stronger.<br />
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The respite unit Jack goes to were feeling overwhelmed by the level of care that he now requires. They wanted more support from the NHS to look after him. They dumped this on me as I went to pick him up the first time he was in respite after coming out of hospital.<br />
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What the hell? They got the reassurance they needed eventually but it meant 4 months of uncertainty for me.I don't think they realize that it has hurt our working relationship.<br />
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I never complain about the level of care Jack requires, I am just grateful that he has survived the latest trauma and he is still with me.<br />
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There are so many ordinary people like me in the this world. Fighting to keep upright in extraordinary circumstances where they are pushed to the limit.We don't want pity, just understanding, support, love,a tiny bit of empathy and for our voices to be heard.<br />
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We may be down, but we are definitely not out. Thanks for listening.<br />
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Lyndylouhttp://www.blogger.com/profile/18133867788700520182noreply@blogger.com26tag:blogger.com,1999:blog-610184634972072534.post-15919676136970988102013-09-30T13:40:00.000+01:002013-09-30T13:40:20.090+01:00In my next life I am coming back as a very pampered pooch.<div dir="ltr" style="text-align: left;" trbidi="on">
Hello there my little gigglers.<br />
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I am so sorry for my lack of blog posts. It's not that I haven't had anything to say, it's more that there is so much to say that I didn't quite know where to start!<br />
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This is probably gonna be a long post, so get yourself a cuppa, pull up a chair and read on.<br />
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I feel like I have been running, constantly trying to catch up since Jack came out of hospital. It's really hard to take home a child who is still quite ill and not have an answer as to why he was. In the past, we knew what was wrong, dealt with it medically in hospital and was usually sent home, thinking "thank goodness I/we don't have to go through that again!".<br />
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This time, the problem still existed. I came home with more meds than you can shake a stick at....over twenty, with about 18 of them everyday meds, and loads more "as required" meds to help should Jack become sore again and be unable to lie still.<br />
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I have had to use these meds, one in particular, quite a lot but in desperation, I have also turned to my faithful friend Google and looked up alternatives to use at home. My favorite, which in the end, I didn't need Google for seems to be peppermint tea! This stuff is saving my sanity at the moment. All hail peppermint tea!<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://encrypted-tbn1.gstatic.com/images?q=tbn:ANd9GcTnPuRnx49Sjq2WoD3LppS3m_bQNIQlCg4ur1KzGtCvZm8KpAf2" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://encrypted-tbn1.gstatic.com/images?q=tbn:ANd9GcTnPuRnx49Sjq2WoD3LppS3m_bQNIQlCg4ur1KzGtCvZm8KpAf2" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The peppermint leaf</td></tr>
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Who'd have thought it would work to relax his bladder but hey, I figured that, if it works on your stomach then hopefully it will have a knock on effect. So far so good.<br />
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Then barely weeks after we got out of hospital, there was our trip to Disney, which was amazing but also exhausting. We were only home a day before Holly and I were heading off to see Robbie Williams in concert. We had a ball but the night ended in a way I never expected.<br />
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The concert was great. After standing for a good 6 hours, we then had to walk for about another hour and a half to get a taxi. In the 15 mins it took to get across town to my car. Holly's joints had seized up. She had trouble getting out of the taxi and had to lean on me to go the short distance to where my car was parked. I had to help her in and physically move her legs into position before snapping the seat belt in.<br />
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She was so distressed and it got worse when we had to do the same again but in reverse to get into the hotel. By the time I got her undressed and into bed, it was 1.30 am but I couldn't sleep. I had known she was having more trouble with her joints than before (she started having trouble about age 14) but this was a huge shock. I will admit, I felt totally overwhelmed.<br />
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So this summer we had numerous appointments with the GP, who drove me nuts with her lack of concern. Finally I managed to persuade her to investigate more when I blurted out that her brother was disabled which seemed to light something in her eyes and she agreed to discuss Holly's case at a team meeting two days<br />
hence.<br />
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True to her word, she called to say they wanted more blood tests. We went up that same day and had to wait a week for results. Meanwhile, much to my annoyance, she insisted that Holly self refer to see a physiotherapist before they would <i>even</i> think about sending her for a scan.<br />
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The blood results came back with a note saying two things were slightly raised in her blood but it had been marked No Further Action. I thought I was going to explode! So we asked for another appointment with the same GP only to be told she had left!!!<br />
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As luck would have it, we were given an appointment the same day we were due to see the physio.<br />
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That morning, she could hardly get out of bed, let alone walk. It hurt so much to watch her struggling. The physio was lovely but said there was little she could do without a diagnosis (which I knew...grrr!!!) She advised us to really push for a rheumatology appointment and was very kind to us, which made us both cry.<br />
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Later in the afternoon, we saw the GP. When he called out her name, Holly had a real job getting out of the chair, as she had seized up, in the 5 mins she had been sitting. She literally shuffled up the corridor towards him. It seemed to take so long to get to his room that automatically I put my arm out to let her lean on me.<br />
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We were in his room less than 5 mins. We didn't have to push for the rhematology referral as he could see by looking at her that she had a major problem. He said she most likely had arthritis, should be walking with a stick and not leaning on her mum!!! He advised us of stuff to take til then and we were out of the door.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://encrypted-tbn1.gstatic.com/images?q=tbn:ANd9GcRnNmbvoO5IuJjQAZN1g8CLB0SkBB4ZSS3K14-EFOs0hZkk0_4x" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://encrypted-tbn1.gstatic.com/images?q=tbn:ANd9GcRnNmbvoO5IuJjQAZN1g8CLB0SkBB4ZSS3K14-EFOs0hZkk0_4x" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">At least nowadays you can get funky ones! To buy click <a href="http://www.clearwellmobility.co.uk/spots-walking-stick.html">here</a></td></tr>
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We got back into the car and I just drove. I didn't know where I was going but we ended up in the country in some secluded spot where she fell apart in my arms. I could feel myself unraveling then too. I didn't know what to say or do cos nothing was going to help so I just held her and cried.<br />
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Then we drove to my dad's house, told him the news and he just held her. My dad looked as dazed as I did! It really felt like a very dark day. As we were leaving, my dad hugged me tight and with tears in his eyes said "my god girl, you were born fighting and you've been fighting ever since, I just hope you have the strength for this one". That's when I really broke. How I got home is beyond me cos I couldn't see for tears.<br />
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During all this, there was family drama too and not of the good kind. My lodger was causing all sorts of trouble for me with family members and I learned a lot of hard lessons this summer.<br />
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So lessons learned you ask?<br />
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Well.....I have learned that if a family member asks you to do something major for them but your gut is screaming NO, then trust your gut cos it <i>will </i>come back and bite you on the ass.<br />
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I have learned that I can't change the way people think about me and that really <i>I</i> no longer care either way.<br />
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I have learned that if someone is going to be two faced, no matter how hard they try, neither of these faces are pretty.<br />
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I have learned that someone who pushes their way into your life and invades every part of it are usually there to cause trouble.<br />
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I have learned that if someone twists your words and people who know you well. believe it, then it is not up to me to change their way of thinking. It's true what they say, you never stop learning...just some lessons are easier to stomach than others.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6iwcnUWr2MQr9AXmDp8TqpSECFWwcoraIlbd2l5c3vJMsFftcgFwpz6SLrqcz2gsKRUnrvDpbskVx_0ak1TmD3JI6029eIO3FKNxowjQvM1Zg8A9IpKCm0XUbjk4ekJ0LOtlgvdIV0qed/s400/QuoteTree.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg6iwcnUWr2MQr9AXmDp8TqpSECFWwcoraIlbd2l5c3vJMsFftcgFwpz6SLrqcz2gsKRUnrvDpbskVx_0ak1TmD3JI6029eIO3FKNxowjQvM1Zg8A9IpKCm0XUbjk4ekJ0LOtlgvdIV0qed/s400/QuoteTree.png" height="316" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Picture from <a href="http://cooperelderlaw.com/category/quotes/">here</a></td></tr>
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We had visitors too. My oldest friend from school and her family came to stay and what a week of madness it was! Her husband Ged helped me cut down half of the garden. I don't know who got the most satisfaction, him or me but I am not sure he enjoyed the trips to the recycling as much! Neither did I cos I did serious damage to my big toe!<br />
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Susie was a huge help with Jack which was awesome as it was nearing the end of the school holidays and exhaustion was kicking in. We had such a laugh together and the house felt empty when they went away.<br />
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We've had two trips to Rachel House, one just to chill and the other was for moving Holly back to Uni. I just love it there and you meet some great people who just "get" you.<br />
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On top of that we managed to pack in another visit to <a href="http://www.crayhouse.co.uk/slides/18_front_of_house.html">Cray House</a> which really is a little slice of heaven for me. This time we invited my friend Kathy and her two kids plus Holly's other friend Georgia. We were only there a few days but everyone had such a laugh. I knew it was going to be good when the banter started five minutes after Diz got in the car. She is so cheeky!<br />
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Holly and I also got away by ourselves for a few days and we went up to <a href="http://www.undiscoveredscotland.co.uk/kyleoflochalsh/kyleoflochalsh/">Kyle of Lochalsh</a>. We had such a laugh but that is definitely a post for another day.<br />
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It has been an eventful summer and I can hardly believe we are at the end of September! Already there is a chill in the air and the colours of autumn are arriving.<br />
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I just love this time of year, don't you?<br />
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Lyndylouhttp://www.blogger.com/profile/18133867788700520182noreply@blogger.com18tag:blogger.com,1999:blog-610184634972072534.post-50525674766402007522013-08-26T13:57:00.000+01:002013-08-26T13:57:40.493+01:00The deadliest shower....ever!<div dir="ltr" style="text-align: left;" trbidi="on">
It's nearly the end of summer and oh boy has it been busy for me!<br />
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I have loved having Holly home for 3 months especially since she has provided me with lots of reasons to smile and laugh.<br />
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Two weeks ago, she out did herself when she called me from upstairs. She had just come out of the shower and was alarmed to hear a buzzing noise coming from it after she had switched it off. She seemed to think that the shower was going to blow up or electrocute her!<br />
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I came upstairs to investigate and sure enough there was a buzzing noise coming from inside the shower. I was confused because it wasn't an electric shower so how it could be buzzing was beyond me. It runs off the gas central heating so instantly has hot water all the time.<br />
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I turned the shower on and off a few times while Holly hovered at the bathroom door, looking anxious.. I stood outside the shower door and listened. The buzzing was coming from near the temperature control button. I leaned in to listen closely and that's when I realised that the buzzing wasn't coming from there at all but from the basket that hangs in the corner of the shower.<br />
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I put my hand in and brought out the battery powered razor she uses and said to her "were you using this in the shower?" She looked at it, like it was some sort of alien object and looked at me confused. "emm, yes I was, why are you asking?" I had switched it off as I brought it out of the shower, so I promptly switched it back on and it started buzzing gently. I then dropped it back into the basket where it started buzzing very loudly. Holly's face was a picture!<br />
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"That's your dangerous buzzing, you numpty!" I said, bursting into hysterical laughter. I laughed so hard that I was clutching my stomach, unable to breathe. Meanwhile Holly is standing indignantly, in just a towel, not sure whether to laugh or cry at her imaginary brush with death.<br />
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I was still laughing an hour later but she just kept telling me to shut up which just made me worse. Who'd have thought having kids could be <i>this </i>much fun?<br />
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Lyndylouhttp://www.blogger.com/profile/18133867788700520182noreply@blogger.com13tag:blogger.com,1999:blog-610184634972072534.post-83058230345285937022013-07-23T13:01:00.000+01:002013-07-23T13:01:38.466+01:00Just an ordinary girl <div dir="ltr" style="text-align: left;" trbidi="on">
Of all the things I have done with my life, being Holly and Jack's mum is my greatest achievement.<br />
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I was told at the age of 24 after having Chemo and Radiotherapy for Non Hodgkins Lymphoma that it was unlikely I would conceive. I remember thinking at the time....uh huh...whatever....but believe me, I can't think that far into the future cos at the moment I don't have one!<br />
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Two years after having the all clear, I broached the subject of babies again saying I wanted to <i>at least</i> try. The consultant had a wee chuckle before he said "I would prefer you to wait another year but two years is acceptable. It is highly unlikely that you will conceive straight away or even at all as your treatment was very aggressive". I stared at him and thought.........mmmmmm.......watch this space.<br />
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Two months later, the toilet and I were on first name terms. I was over the moon! The doctors were shocked. Nine months on, having been sick morning, noon and night I was a pale, sickly mess who was beginning to wonder if it was all worth it.<br />
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Holly was born at 6.57 on a Friday morning in April. She was born without a blemish on her, skin peachy and eyes wide and staring. Father of the Year wanted to call her Kirsty, Kerry or Heather but I wasn't convinced. I suggested Holly and he wasn't impressed. I wanted that name cos I had found it in an<br />
alternative baby names book which gave different meanings to names than the norm. Holly meant "the gift of life". Under the circumstances, it was the perfect name for her.<br />
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She looked like an angel but seriously she was the devil's child! She had her first tantrum at 6 months old in her bouncy chair and was in such a rage that she ended up on her hands and knees with the bouncy chair strapped to her back. It was so funny! By the time she was one, she was talking in sentences, had a photographic memory and was already quite the wee performer. She had a major aversion to being potty trained and had separation issues at night with bed times being a nightmare culminating in a fall that had us in a state, rushing to A & E. Still it didn't stop her from screaming and performing every bedtime.<br />
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When Jack was born, she totally adored him. He was a quiet baby, didn't smile til he was 8 months and didn't walk til he was two. By then it was clear that Jack's life wasn't going to be smooth but who knew just what a rocky road it was going to be.<br />
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Having a husband who worked away and when he was home, felt he should be on holiday, was tough. He rarely helped with the kids and I found that I was being bogged down with it all. After a particularly hard day of chasing Jack around trying to keep him safe, seeing to his needs whilst constantly saying "<i>in a minute!" </i>to Holly every time she asked me to do something with her, I cracked.<br />
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I was immersed in the hell of constant physio, occupational and speech therapy as well as running around after a child who had no sense of danger, who thought nothing of eating the dog's food (I jest you not!), drinking out of the toilet, climbing, escaping out of the back door running around in the freezing rain in just a nappy. A child who never seemed to be anything but hungry and thirsty, a child who rarely slept, who for two years was in constant pain. Add to that the endless appointments and arguing with doctors who didn't believe half of what I told them.<br />
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That night, I had a damn good cry when the kids were in bed. Then I got out a pen and paper and wrote down all the things that stressed me out the most. Not having time to do any housework was high on the list so after a chat with my mum, I hired someone to help out a couple of times a week. I got a lot of teasing for having hired help but it was a god send. The biggest thing though was not being able to give Holly the time she needed and deserved. I decided right then and there that I would make sure that any respite I got from Jack would be Holly's time. It wasn't much at first as I got little respite but when my mum and dad started taking Jack on a Saturday then we would take off on an adventure.<br />
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Sometimes it was hard to get the energy up but I had made a promise and I couldn't break it! There were times that having that day with her was the only thing that got me through the exhaustion.We had so much fun together. One day a stranger asked us what we were laughing at and we couldn't honestly tell him!<br />
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This fun times helped us both cope with Jack's condition and his brain surgery, divorce, deaths in the family, endless hospital stays and a million other traumatic things that happen when you are growing up. I tried to be as honest about it all as I could but I made mistakes along the way.<br />
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Unfortunately there is no instruction manual for this. If I screwed up, I would admit it and just hope that my kids knew that it was all done in the name of love.<br />
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Being a single parent was definitely not a life choice of mine. I came from a broken family so I didn't want that for my children but I didn't truly understand just how alone I would be in bringing them up.<br />
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Having Holly and especially Jack, has changed me. Yes I am still the champion of underdogs, hater of bullies, detest unfairness and still willing to challenge anyone who treats my friends and family badly. In the past though, I would need to get really mad before I would stand up and be counted. Now I channel that anger and put it to good use fighting for what Jack needs.<br />
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Father of the Year often used to tell me I was stupid. I believed him for most of the 14 years I was married to him but then there came Jack with all his problems. I had a thirst for knowledge, like no other, to try to find answers. The internet became my best friend and I learned so much.<br />
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My confidence grew and I learnt to do my homework to be able to argue with doctors, look for a diagnosis that wasn't far off the mark every time. I listened to my gut instinct and it has served me well.I have campaigned along with a friend to get back services for our kids that were going to be cut and we won. Jack, Holly and I have graced the front page of our local newspaper many times highlighting disability issues as well as a national paper, been on local and national radio and for my sins, even TV which I couldn't watch, so mortified was I.<br />
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I have learnt not to sweat the small stuff and to pick my fights carefully. I take my anger, frustration and helplessness at the unfairness of the system and channel it into trying to make changes at school, respite, hospital and any other organisation involved in Jack's life. I don't claim to be an expert on legislation but <i>I am</i> an expert on Jack and all that he needs. I believe that there is no point moaning about it, if you are not willing to stick your neck out and do something to change it.I also try and give advice to people I know who are starting out on a similar journey. I help them trawl through all the bullshit, am a listening ear and someone to rant at.<br />
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I have stayed up til the wee small hours helping Holly with homework, projects, helping her revise, held her whilst she has cried because someone has hurt or bullied her, championed her through every little achievement, been the loudest parent at Prize Giving (I am not exaggerating!), sorted out problems at school, the list goes on.<br />
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Single parents get a bad name but seriously we are doing the emotional and physical work of two!<br />
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Without both of my children, I would be living a fairly ordinary existence. Throughout the highs and lows, I have rarely asked "why me?" Because why not me.. What doesn't kill you makes you stronger, right?<br />
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I have been told many times since Jack was born that "special children have special parents". I absolutely detest that sentence! I am not <i>special</i> just ordinary living an <i>extraordinary</i> life, not of my choosing. Or the other one "you only get what you can handle". How can anyone possibly know how much trauma one person can take?<br />
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Someone once told me that "I had no life!" My reply was "If that was the case, then I would be dead. Just because my life is nothing like yours doesn't make it meaningless". I was so hurt and angry.<br />
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Some well meaning people have said "oh you wouldn't change Jack for the world now would you?" My answer would have to be "Yes I bloody would! I would make him <i>well</i>".<br />
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I would trade this extra ordinary life just for <i>that </i>but there are some things that I just can't change, no matter how much I stamp my feet, scream and shout at the world!<br />
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So I have finally come to understand the meaning of the poem my mum gave me when Jack was first diagnosed: <br />
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<span style="background-color: #f9f9fb; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 16px; line-height: 22px; text-align: center;">God grant me the serenity</span><span style="background-color: #f9f9fb; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 16px; line-height: 22px; text-align: center;"> </span><br />
<span style="background-color: #f9f9fb; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 16px; line-height: 22px; text-align: center;"> To accept the things I cannot change; </span><br />
<span style="background-color: #f9f9fb; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 16px; line-height: 22px; text-align: center;"> Courage to change the things I can; </span><br />
<span style="background-color: #f9f9fb; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 16px; line-height: 22px; text-align: center;"> And wisdom to know the difference.</span><br />
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Emm I am not sure yet about the wisdom bit but I am working on it!!!<br />
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So what is your greatest achievement?<br />
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Lyndylouhttp://www.blogger.com/profile/18133867788700520182noreply@blogger.com22tag:blogger.com,1999:blog-610184634972072534.post-59017036748147175552013-07-12T17:10:00.005+01:002013-07-12T17:10:42.778+01:00Make A Wish.....cos dreams really do come true.<div dir="ltr" style="text-align: left;" trbidi="on">
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So much has happened to us this year that I am struggling to put it all into words.<br />
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Jack being in hospital was so stressful and emotionally draining that I didn't really think I had any energy for anything more. In the last two years he has scared the living daylights out of me. This time was more intense and much scarier. This time, I really thought I had lost him.<br />
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Getting him home was my only goal and once there, keeping him well. I had something amazing to look forward to but I had shoved it to the back of my mind cos I didn't dare believe it would happen.<br />
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In hospital, Holly kept telling him "it's ok if you aren't well enough to go to Euro Disney, we will be quite happy to chill at home" and she meant it, though both of us crossed our fingers, toes, legs...you get the picture.<br />
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The first week home was a nightmare as he was still not great but after that we didn't look back. He didn't bounce back like before which was worrying but not surprising. This time I had to take baby steps and not rush him.<br />
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I kept him at home for the first two weeks before tentatively trying him back at school part time. It went well and even though he was quite tired after, my gorgeous boy was getting happier and brighter by the day.<br />
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My boy was back and I felt like my heart was gonna burst. He really is such a wee warrior.<br />
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It was <i>then</i> and only <i>then</i> that I began to get excited about going to Disneyland Paris. This was no ordinary holiday though, as this was Jack's wish being granted by <a href="http://www.make-a-wish.org.uk/fundraising/donate/?gclid=CNrt3u2WjLgCFQ_LtAodBnwAZw">Make A Wish</a>, UK.<br />
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The week before we were due to go, Jack's wish granter, Vicky, was on the phone finalising everything and then we had to wait for the Wish pack to arrive. When it did, I was completely blown away! They had thought of everything...from a crelling harness for the plane, paying for my parking at the airport, letters for the cabin crew, right down to spending money for Jack. I was blubbering within minutes of reading it all!<br />
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That's when the countdown began. Numerous texts back and forth to my friend Kathy, telling her how many sleeps we had left til we were off on our adventure! I was full of childlike glee. We had paid for Kathy to come with us, as we knew that in order to enjoy the time with Jack, Holly and I were going to need some help.<br />
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The morning of the trip, I honestly couldn't tell you who was more excited!! Poor Jack was dragged outta bed at stupid o'clock so that we could be on the road for 8am, which didn't happen but hey the intention was there!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWQDQ7vDsjt3mtocWEr2rgebLbbGx3QdXMlZQM4yxcy7SGfMz6gZmbxKDDE6aLlTljF3V7y23L73lniBCuB8TNdd32vuRWxq-1PwS15p2CiH2rupOGLUTHmQ4xktIyYaw0Lbdkd6tQcQzy/s1600/IMG_7089.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="238" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjWQDQ7vDsjt3mtocWEr2rgebLbbGx3QdXMlZQM4yxcy7SGfMz6gZmbxKDDE6aLlTljF3V7y23L73lniBCuB8TNdd32vuRWxq-1PwS15p2CiH2rupOGLUTHmQ4xktIyYaw0Lbdkd6tQcQzy/s320/IMG_7089.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jack and I on the plane. He already has his eye on the guy's seat in front of him.</td></tr>
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The flight was uneventful but Jack's wheelchair got damaged by the baggage handlers. Once we got him back into his wheelchair one of them just handed me the foot rest like it was a spare part we didn't need! When I said "no way, you broke it, so you fix it!" he then got a hold of another guy who stuck his screw driver into the side of the wheelchair and shrugged his head. Meanwhile I am frantically rummaging in Jack's bag for the allen key which is usually kept there but then I had a flashback of me removing it just in case I was stopped at customs with it. Aaaah!<br />
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Next thing we were being whisked off to an Air France desk where the drama continued. They had the ingenious idea of giving us the borrow of a new wheelchair which they planned to deliver to our hotel, later that day. When I asked would the new wheelchair have all the harnesses and straps on it that Jack's had they said yes but with a look on their face that said no! Turned out "no" was the correct answer. Meanwhile our transport to take us to Disney was waiting patiently so our escort went out to them, to let them know what was happening before he took Kathy and Holly out with all the bags.<br />
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Once they had gone, I demanded that they just tape the damn thing on, give me more tape just in case and let me go on my way. My Disney clock was ticking and I was getting pissed off cos we were missing valuable time. Jack, who was obviously bored by all the drama, slept through it all!<br />
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Once we got to the hotel, I started to relax a bit. We quickly got Jack changed and headed out for some fun.<br />
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Much later, with the bags unpacked, Jack medicated and asleep, I was rummaging in Jack's wheelchair bag again and hey presto...I pulled out the elusive allen key. I let out a yell of triumph, looked up to see Kathy and Holly staring at me in amazement before they both fell over laughing, spluttering that "if you had found it at the airport then we wouldn't have had so much drama!" I just stuck my tongue out at them! Smart arses!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSXUqvVZq-4OTW6g1JpbKcLKZx1VDoWGj-Ou5V72-RVITnUG-dPrkRh8PBl3FGkN1gtIHVG4SUAXoj1aLv_0kEmAwLOcMOuHGRc6jltZDvQCne1OoIa9hUlQsyaW2qDmpaml73hgoQNvUB/s1600/newport+bay+hotel+room.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhSXUqvVZq-4OTW6g1JpbKcLKZx1VDoWGj-Ou5V72-RVITnUG-dPrkRh8PBl3FGkN1gtIHVG4SUAXoj1aLv_0kEmAwLOcMOuHGRc6jltZDvQCne1OoIa9hUlQsyaW2qDmpaml73hgoQNvUB/s320/newport+bay+hotel+room.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jack's first view of our room.</td></tr>
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The rest of the holiday was like that. Holly and Kathy had to look after all the money, tickets etc as I had so much stuff to remember to do with Jack that I became incapable of doing anything else, much to the amusement of those two. It's fair to say that I wasn't safe to be in charge!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGL-zNU41_dPP3g3ERFXJcsfk1UnVMMPKeH2mOlDPjt5asYXM6YWVWK95oaJ6h4i7MnpuyxaMYon8wTDsHRuz7T7hj4q1BPuUhPHS9fW_uYM2V-UEoKvLDCB-fHt_Ew6vB6OiKj5MpOTRx/s1600/IMG_7140.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="238" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGL-zNU41_dPP3g3ERFXJcsfk1UnVMMPKeH2mOlDPjt5asYXM6YWVWK95oaJ6h4i7MnpuyxaMYon8wTDsHRuz7T7hj4q1BPuUhPHS9fW_uYM2V-UEoKvLDCB-fHt_Ew6vB6OiKj5MpOTRx/s320/IMG_7140.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jack and I having a wee cuddle.</td></tr>
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We had so much fun that at one point I nearly peed myself laughing! When I said that out loud, Jack started giggling. That boy is more switched on than we know!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBYRYhbIfJdl9AtB4-oPyUpzHD9y9K9H_3W-3zAsDkG37sgVl60F7I34w1cYx3tayJblUc1zRpZmTV-stjazfd_qjDL3yPJfaPETLsSba8mLfvMy0ImKTJmPXTfkK-16-vn4R8Ru_XVct4/s1600/IMG_7335.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBYRYhbIfJdl9AtB4-oPyUpzHD9y9K9H_3W-3zAsDkG37sgVl60F7I34w1cYx3tayJblUc1zRpZmTV-stjazfd_qjDL3yPJfaPETLsSba8mLfvMy0ImKTJmPXTfkK-16-vn4R8Ru_XVct4/s320/IMG_7335.jpg" width="238" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Wearing his new Buzz Lightyear Hoodie.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgl4sF6ku7CddWVGdm3IusXo4WjpxG9y_-r3fyoEAV0XviBuS4Zcv_MSv9O0vNTnqRkyrka-51jlvRJMeq1DnrmIHwwYO7WJSVx_l9mINS1fzoIOWtd1q-VGuhAWlD9IUt7HMfpCjXf9vOj/s1600/photo+%252875%2529.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgl4sF6ku7CddWVGdm3IusXo4WjpxG9y_-r3fyoEAV0XviBuS4Zcv_MSv9O0vNTnqRkyrka-51jlvRJMeq1DnrmIHwwYO7WJSVx_l9mINS1fzoIOWtd1q-VGuhAWlD9IUt7HMfpCjXf9vOj/s320/photo+%252875%2529.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Toy story fun.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaoVLdjcxOoyHC-TL1A_-j2uza2Zc7QRqAfeoBjZfscmkmezyesbY_igtwl9vlPCh9R_CGudtzUkPu87CPzscjJYzFIzRfUM7MrGNvnKbTUbigEBIMN7dibWagdX2Crr_b0k7v8gCyaz9Z/s1600/IMG_7609.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjaoVLdjcxOoyHC-TL1A_-j2uza2Zc7QRqAfeoBjZfscmkmezyesbY_igtwl9vlPCh9R_CGudtzUkPu87CPzscjJYzFIzRfUM7MrGNvnKbTUbigEBIMN7dibWagdX2Crr_b0k7v8gCyaz9Z/s320/IMG_7609.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Waiting for the parade to start.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFV_hSDIPr4S2yPd1RbECyrdGtSw6XKoYFTFdD57YawXdTlgc4iliMZe1acKEkd_dTJ5U5JwsaFRGUn_jrQ1UONlLHsDPOYopRCqvOoVjt19rd-oAd61y7m3YWa_K4S0g2Ni5qD3lSovI7/s1600/IMG_7797.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFV_hSDIPr4S2yPd1RbECyrdGtSw6XKoYFTFdD57YawXdTlgc4iliMZe1acKEkd_dTJ5U5JwsaFRGUn_jrQ1UONlLHsDPOYopRCqvOoVjt19rd-oAd61y7m3YWa_K4S0g2Ni5qD3lSovI7/s320/IMG_7797.jpg" width="238" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cuddling up to Simba.</td></tr>
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I bought a new camera at the airport but it never made it out of the box cos I guarantee I would have lost it. I was so scatter brained! I am sure I left the house with my brain intact but you wouldn't have known it. Keeping tabs on my mobile was stressful enough! Thankfully Holly and Kathy managed to capture the smiles and giggles.<br />
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Jack was a completely different boy when we were there. He was taking everything in, was animated, smiley, happy and full of giggles. It was a beautiful sight after all he had been through. It brought tears to my eyes.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOPnnH3RwIrQgJtqvSTKDBEMB81J96CMcQF76iIoDmFhz4qNPwQvOVxvOFWV5QfIt6KJpst04SAWleHFV2CiPkwOzQnMYWsVSSexuv7YpzDaMXQjl83SHAytlXMVIRWXpR0Z8LELl-wuKu/s1600/IMG_7937.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOPnnH3RwIrQgJtqvSTKDBEMB81J96CMcQF76iIoDmFhz4qNPwQvOVxvOFWV5QfIt6KJpst04SAWleHFV2CiPkwOzQnMYWsVSSexuv7YpzDaMXQjl83SHAytlXMVIRWXpR0Z8LELl-wuKu/s320/IMG_7937.jpg" width="238" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Loving all the bright lights.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtb6KINGKfZznJqCmuCw_Ls1TvSjLjycjf8dO2TBUrqxdSH3_wJPDtuhO04vdaumoz_2y1rF3G1EMsTW1JPheWCNt3V7OkQO-isolppCsUlidjQE_8UnJf2HEXSRgu9kugL5YygafL1kMh/s1600/IMG_7967.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="238" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjtb6KINGKfZznJqCmuCw_Ls1TvSjLjycjf8dO2TBUrqxdSH3_wJPDtuhO04vdaumoz_2y1rF3G1EMsTW1JPheWCNt3V7OkQO-isolppCsUlidjQE_8UnJf2HEXSRgu9kugL5YygafL1kMh/s320/IMG_7967.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">On the Tram Tours ride,</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgY38JsRKebCJ5DNH4Jm7wqQP8Uh1F8CEyQJoXRUv3iJ9_D42E8NZ2ABvU0hBu1FnnRnlSOWKkEQPoh5_M2yhPxXeh64mGeTSGuN2UNt5ZZrOP69ljLPcI1FgS4AjtAHWzUT6EYvP-vApWb/s1600/IMG_8047.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgY38JsRKebCJ5DNH4Jm7wqQP8Uh1F8CEyQJoXRUv3iJ9_D42E8NZ2ABvU0hBu1FnnRnlSOWKkEQPoh5_M2yhPxXeh64mGeTSGuN2UNt5ZZrOP69ljLPcI1FgS4AjtAHWzUT6EYvP-vApWb/s320/IMG_8047.jpg" width="238" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Even the rain didn't stop him from smiling.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBM_MZoMAtfZ0khjVsAFEsyMKDYWWWnzxWQHYK53MwH0l_pQAocAoVm0dYGe6OAzbLFYFJV9BUJP_ss0Tsd4uevH0uKYvyuyo7cly8c19HptTjmaHyQ-m52a2wxBKBI58NGHD5Bg54b7z6/s1600/IMG_8321.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="238" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhBM_MZoMAtfZ0khjVsAFEsyMKDYWWWnzxWQHYK53MwH0l_pQAocAoVm0dYGe6OAzbLFYFJV9BUJP_ss0Tsd4uevH0uKYvyuyo7cly8c19HptTjmaHyQ-m52a2wxBKBI58NGHD5Bg54b7z6/s320/IMG_8321.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">With the Chipmunks at a character lunch.</td></tr>
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I got chatted up by a French man called Larry! lol He asked me if I only had two children and when I said yes he said "no I think you are going to have 4 kids, there are two still in your stomach so when are we making them??!!!" I hadn't really heard him but I knew by Holly's reaction that she wasn't impressed! Kathy and I just fell about laughing when she explained what he had said to me while Holly ranted on about there being "no more babies, where are you going to put them, there's no room cos I still technically live at home!" The more she ranted the more we laughed.<br />
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On our last night it was Kathy's turn to get admired. This time there were no words spoken just the guy looking her up and down, undressing her with his eyes, mouth hanging open complete with primal animal sounds. We laughed so hard I thought I wasn't going to get breath! Think it made her night.<br />
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It was only a short holiday but boy did we pack it in. <a href="http://www.make-a-wish.org.uk/fundraising/donate/?gclid=CNrt3u2WjLgCFQ_LtAodBnwAZw">Make A Wish</a> paid for us to see Buffalo Bill's Wild Wild West Show and have lunch with the Disney characters which was such a laugh. All the characters were so gentle with Jack who was lapping up all the attention, smiling and giggling.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhR73CiK7X0d6DFWB6gmHFi-0qBtPtTqJtKw4B_XtL65miMOKm7EOChuMXiaXiOeIMRwKQ29m37TXlYaczjSFQTLyDkJp1YcdeDJsk7h16cHhwHOJEZ6yzVz84wztOr5GaZC_aDaN71Ho-6/s1600/IMG_8377.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhR73CiK7X0d6DFWB6gmHFi-0qBtPtTqJtKw4B_XtL65miMOKm7EOChuMXiaXiOeIMRwKQ29m37TXlYaczjSFQTLyDkJp1YcdeDJsk7h16cHhwHOJEZ6yzVz84wztOr5GaZC_aDaN71Ho-6/s1600/IMG_8377.png" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">At Disney Studios</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9JRgeCaol3J4M7wHOFs72YmjNRhfKM0pSUUTPX2hE2_dhpoBxtx-B6uwQA6j6TBOiGE1XNJdeJBlNh81gAnXQzGmpwaN53pa0NsBcQ2e0ideFju6TULQrbB_0ajHEgc0Vu3len7HF9GPS/s1600/photo+(4).JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj9JRgeCaol3J4M7wHOFs72YmjNRhfKM0pSUUTPX2hE2_dhpoBxtx-B6uwQA6j6TBOiGE1XNJdeJBlNh81gAnXQzGmpwaN53pa0NsBcQ2e0ideFju6TULQrbB_0ajHEgc0Vu3len7HF9GPS/s320/photo+(4).JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Goofing around.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPDPH2NVa9kLOgxhHVvXJTcZM5T9b7Kp4pbZFp_qOFdykhEZDrykOjZyE6aGEkL6Tf9aAdp2iLEMMzWQxEPJGOBoVrrFW8iipOiAzslPBCQTBEX77wUim-SyJJMGnGqtNBJJi4AOaf0trZ/s1600/photo+(5).JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjPDPH2NVa9kLOgxhHVvXJTcZM5T9b7Kp4pbZFp_qOFdykhEZDrykOjZyE6aGEkL6Tf9aAdp2iLEMMzWQxEPJGOBoVrrFW8iipOiAzslPBCQTBEX77wUim-SyJJMGnGqtNBJJi4AOaf0trZ/s320/photo+(5).JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">More silliness.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiq2BUFIM9lnpwUKnrlCMZKuhr7AhKIgvsdBFK_Y3Ol1vni9lsKT6vQwDLd5JbNodcmCA6RjGstPW7WNEpylycZcfcLpRueJXlFLThQdC8QJbTygj8j2kfnbDc8e6tm2h1KhBAt0zE0lkEZ/s1600/photo+(8).JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiq2BUFIM9lnpwUKnrlCMZKuhr7AhKIgvsdBFK_Y3Ol1vni9lsKT6vQwDLd5JbNodcmCA6RjGstPW7WNEpylycZcfcLpRueJXlFLThQdC8QJbTygj8j2kfnbDc8e6tm2h1KhBAt0zE0lkEZ/s320/photo+(8).JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jack with his fellow super heroes.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJeVIdWqJVaxBnzNUW4oOEPHM5KhWQnweA6_WWYVjJGQdqczdC5QAUwdbuF0KrXTZ5k-FJ8Tm1eCNLoOw7J6cpSP7QF_5iYI0rcpIQJOefDx0u-cPb86Ii69Wz2GEj3V-Xoshc4VwtR0ra/s1600/photo+(16).JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJeVIdWqJVaxBnzNUW4oOEPHM5KhWQnweA6_WWYVjJGQdqczdC5QAUwdbuF0KrXTZ5k-FJ8Tm1eCNLoOw7J6cpSP7QF_5iYI0rcpIQJOefDx0u-cPb86Ii69Wz2GEj3V-Xoshc4VwtR0ra/s320/photo+(16).JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Laughing at his mum.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjO5hIH20E9srLyn94fQQc52ccQ6Z0VVu1qjmpZ8YakYoD02qH0QpT3swNSSnfHrh4l_8sakLSaux_TeAl6vhwty2xqkB75kA9wD37OoI-jJJyiD8pkDApAqnYmT2n_zXVErp2uUh4lOLUY/s1600/photo+(23).JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjO5hIH20E9srLyn94fQQc52ccQ6Z0VVu1qjmpZ8YakYoD02qH0QpT3swNSSnfHrh4l_8sakLSaux_TeAl6vhwty2xqkB75kA9wD37OoI-jJJyiD8pkDApAqnYmT2n_zXVErp2uUh4lOLUY/s320/photo+(23).JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">It's Mickey time.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgK3-0imAQ9tyyApHD8cmpsF8RyLV436vlKWTgEBxQ2spKQ0Dn4zor1yS73IbJsvWm1bo6uPpcKw8BcVat-0QIK_9KMIGFKYsLp4U0WJLZS2LKMbEbuNsrjNHc6r7zkpmM9oYpkjIAD8woF/s1600/photo+(27).JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgK3-0imAQ9tyyApHD8cmpsF8RyLV436vlKWTgEBxQ2spKQ0Dn4zor1yS73IbJsvWm1bo6uPpcKw8BcVat-0QIK_9KMIGFKYsLp4U0WJLZS2LKMbEbuNsrjNHc6r7zkpmM9oYpkjIAD8woF/s320/photo+(27).JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jack has his eye on those whiskers.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSEJb2jBgh19VmyrQUAZxDokGNU1YAra2yzTG1lrFTCmgIUadjd4cqXHmcfs6gAHbksc2D-2xAILJb7dxV5XnFkGyTcRswY3wmMlqBv4rSlR2SiVoV79eQBuzjSaqvSSETjPbDDT34RuHG/s1600/photo+(33).JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiSEJb2jBgh19VmyrQUAZxDokGNU1YAra2yzTG1lrFTCmgIUadjd4cqXHmcfs6gAHbksc2D-2xAILJb7dxV5XnFkGyTcRswY3wmMlqBv4rSlR2SiVoV79eQBuzjSaqvSSETjPbDDT34RuHG/s320/photo+(33).JPG" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Captain Jack.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOX_bYZ4ZFvuCzcHzElusZVjRcPaPyAB3HD1aNraQtQX_UUhOtq46pwkCQRF7So-lWvpF4nncs2cpxU37o71yH3v9Mc3dHh5gHQWU_6b-gcxiXlP3S8qIfylHHyOoouaq4sphkgCloL586/s1600/photo+(34)-crop.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOX_bYZ4ZFvuCzcHzElusZVjRcPaPyAB3HD1aNraQtQX_UUhOtq46pwkCQRF7So-lWvpF4nncs2cpxU37o71yH3v9Mc3dHh5gHQWU_6b-gcxiXlP3S8qIfylHHyOoouaq4sphkgCloL586/s320/photo+(34)-crop.JPG" width="204" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Kathy modelling her Tigger hoodie.</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjjrFe78hos91NYd2DAyQ40e7__oplYPHxFbMIMwC98bmkYcptVnS8oXcwl0bLphu_xBTdk_UrkSXj5iu2_FEso58QFEum7PSgC-YR9LmpGncCwjozb6GDx6482qrLuImrUz9coGKQB6Af/s1600/photo+(37).JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgjjrFe78hos91NYd2DAyQ40e7__oplYPHxFbMIMwC98bmkYcptVnS8oXcwl0bLphu_xBTdk_UrkSXj5iu2_FEso58QFEum7PSgC-YR9LmpGncCwjozb6GDx6482qrLuImrUz9coGKQB6Af/s320/photo+(37).JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Check these two out.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuhYQvG7jFkcPVYuonimcrcVck2EXnhmUVGnVg4A9xV1gyQoNli9X-3PaPDBqSbpnpioHXRHmmNPKdKcbxAR8CJ3ahYMJIe966m96K7wwVyJDyQtSXToJzv_FI1ZTSbhqgG_fqWLxwhjzg/s1600/photo+(45).JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjuhYQvG7jFkcPVYuonimcrcVck2EXnhmUVGnVg4A9xV1gyQoNli9X-3PaPDBqSbpnpioHXRHmmNPKdKcbxAR8CJ3ahYMJIe966m96K7wwVyJDyQtSXToJzv_FI1ZTSbhqgG_fqWLxwhjzg/s320/photo+(45).JPG" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cheeky!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWzGqPNQhzWlYcMISaHhn6fWWfSHS_40u6yYMylKWdnPCu7oR9lVnZDlX00AmAn3WuZRopYRv5Ud_sM1JYf8ORGkajffDIlGJvDDOmXVTs2SrUpLMkG5SA_F9eBoe-L_-DemwZYgUJsQsb/s1600/photo+(58).JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWzGqPNQhzWlYcMISaHhn6fWWfSHS_40u6yYMylKWdnPCu7oR9lVnZDlX00AmAn3WuZRopYRv5Ud_sM1JYf8ORGkajffDIlGJvDDOmXVTs2SrUpLMkG5SA_F9eBoe-L_-DemwZYgUJsQsb/s320/photo+(58).JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Windswept and interesting.</td></tr>
</tbody></table>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaVlu6BXsnrfQrUc7ScUUNrsgtDD6vD0AjGUzqG7OTmEXb6zMIcwuBdFKVmknmd9C_Rkea7gWrVH7E9kmmDF-Q2hSOwzVLOSIPuEjz1LUw7zGRKxiBz-Dz2B4RF0rcVJ_8vNG-WAEbZ-dV/s1600/photo+(81).JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgaVlu6BXsnrfQrUc7ScUUNrsgtDD6vD0AjGUzqG7OTmEXb6zMIcwuBdFKVmknmd9C_Rkea7gWrVH7E9kmmDF-Q2hSOwzVLOSIPuEjz1LUw7zGRKxiBz-Dz2B4RF0rcVJ_8vNG-WAEbZ-dV/s320/photo+(81).JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Cutie pie.</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhD5s6PncvhxSJvhTlVqE8KJl4TKDMLwZbqGJMvKNbdYsrKemDeXeZ_NsgzhMp9MPDyCrFEwbGEso-7jv1vcK5z_kQGuchEQRK8Nj9ZRrkhfvg35nurDulGvvNAwgj9bzfKVSBKF6sQa9TL/s1600/photo+(82).JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhD5s6PncvhxSJvhTlVqE8KJl4TKDMLwZbqGJMvKNbdYsrKemDeXeZ_NsgzhMp9MPDyCrFEwbGEso-7jv1vcK5z_kQGuchEQRK8Nj9ZRrkhfvg35nurDulGvvNAwgj9bzfKVSBKF6sQa9TL/s320/photo+(82).JPG" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">One of the musketeers!</td></tr>
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<br />
We were only away for 4 days but as it was quite physically and emotionally demanding, it was more than enough time away.<br />
<br />
On the way back to the airport, our driver went out of his way to be so helpful. He was such a star. Once again Air France let us down. Our special assistance to get on the plane didn't arrive even though it had been booked and discussed at the check in desk. The ladies at the boarding desk were less than helpful and by the time someone came to help, the entire plane was already boarded and we were last on. As you can imagine, it was a bit stressful, especially since there was no one there to help us.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJd91W85JvhDnGGDvwXwDO4lY7aj3utxgqzOOOGNRETaksVw4t_qd92Qebya3UBonTSxkqjAmEaffQYHU1GROavr_eqc4dHjVtmpF8IUCrqFOOzZdT4qPYbk1dwTj8ZDVmJ1zfRcsqupKo/s1600/photo+(11).JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJd91W85JvhDnGGDvwXwDO4lY7aj3utxgqzOOOGNRETaksVw4t_qd92Qebya3UBonTSxkqjAmEaffQYHU1GROavr_eqc4dHjVtmpF8IUCrqFOOzZdT4qPYbk1dwTj8ZDVmJ1zfRcsqupKo/s320/photo+(11).JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Holly and our lovely driver.</td></tr>
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Once we were on the plane though, we had a good laugh about it cos really what else is there to do? No way was it going to ruin what had been a great time all round.<br />
<br />
I have flown with Air France before and the exact same thing happened so I should have expected it.<br />
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We didn't arrive home until 10.30pm and it took three of us to get Jack ready for bed and draw up his meds. I think I finally fell into bed at midnight.<br />
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It was a few days before I came down off of my high. Thank you <a href="http://www.make-a-wish.org.uk/fundraising/donate/?gclid=CNrt3u2WjLgCFQ_LtAodBnwAZw">Make A Wish</a> for a memory which we will cherish forever.<br />
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Lyndylouhttp://www.blogger.com/profile/18133867788700520182noreply@blogger.com25tag:blogger.com,1999:blog-610184634972072534.post-46749377977222694462013-05-31T09:18:00.000+01:002013-05-31T09:18:46.232+01:00Exhausted.com<div dir="ltr" style="text-align: left;" trbidi="on">
Hey from very sunny Scotland.<br />
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I have been awol for some time as Jack was back in hospital with unexplained pain. It seems to have come from his bladder and kidneys. Stones were queried but not proven.<br />
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The pain was fairly intense and it took a long time for them to get him to a point where he was comfortable.<br />
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It was a very scary time as he had three periods where he stopped breathing and was rushed to HDU. My stress levels were off the Richter scale!<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7MPGWiVAv-a2otGEaY6hkmgc_qhBpxSaqeZ5fP9LNGJ4TEl6DjOPa82LOm05nhs1J0yvvjyo-8FHwgUtomZzaS0PQWySSjWZciS-uhKdvIiwKMzxQS3PHqi_8ap97vBvE1nPiuHBfPTUp/s1600/941857_10201096410399449_1718475723_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="239" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7MPGWiVAv-a2otGEaY6hkmgc_qhBpxSaqeZ5fP9LNGJ4TEl6DjOPa82LOm05nhs1J0yvvjyo-8FHwgUtomZzaS0PQWySSjWZciS-uhKdvIiwKMzxQS3PHqi_8ap97vBvE1nPiuHBfPTUp/s320/941857_10201096410399449_1718475723_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is the day he properly woke up in HDU after about a week of pain relief and sedation</td></tr>
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<br />
We are home now and he is still a bit uncomfortable so I am now searching the web for some home remedies as he is ok when he is lying down but really uncomfortable sitting up.<br />
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Exhausted doesn't even cover how I feel but on the plus side I have my lovely daughter home for the summer and she is helping to keep me sane.<br />
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I hope all is well in your world my little gigglers. </div>
Lyndylouhttp://www.blogger.com/profile/18133867788700520182noreply@blogger.com12tag:blogger.com,1999:blog-610184634972072534.post-31383186704910148442013-03-02T01:45:00.001+00:002013-03-02T01:45:28.671+00:00Escape to Cardiff<div dir="ltr" style="text-align: left;" trbidi="on">
It's been a hectic few weeks for me in my little part of Scotland.<br />
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Jack has had two chest infections, had an emergency visit to A & E after falling out of his bed, had a urine infection and is now onto another one. As I type this post, I am waiting for him to pee so that I can send a sample away. He hasn't gone for over 8 hours!!! It is 11pm so it looks like it is going to be a long night.<br />
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Whilst all this has been going on, I managed to get away for a few days to Cardiff in Wales with Virginia whilst Jack was in respite.<br />
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Virginia's main reason for wanting to go there, was the castle, as it is steeped in history which she has a real passion for. I am ashamed to say she knows more about Scottish history than I do!<br />
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We managed to get really cheap flights to Bristol and from there we had an hours train journey to Cardiff. Our accommodation was about 7 mins walk from the train station, 5 mins walk from the city centre and we were right across the road from the Millennium stadium.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://www.walestouristsonline.co.uk/pictures/mainpics/2132_864VT2LNWJ8B.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="http://www.walestouristsonline.co.uk/pictures/mainpics/2132_864VT2LNWJ8B.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Pic from <a href="http://www.walestouristsonline.co.uk/cardiff/tourist/The_Millennium_Stadium.html">here</a></td></tr>
</tbody></table>
<br />
Our accommodation was nice but the walls were paper thin. On our first night we could have joined in with the conversation the two guys next door were having, it was so clear. I did resist the urge...honest!<br />
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We had great fun visiting the castle. I couldn't even begin to imagine what it would have been like to live there. The rooms were so beautiful and ornate it took your breath away. Who would have the patience to paint all those intricate details I ask you? I would have gotten bored and gone in search of chocolate long ago!<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwWxAudPwH8FylLTIPHAizCPoateMahTB3ehXL3_nZiMuAvLSdaGIv0U3eMzSOItZVFdcpEdorA6z6QJ2pWybg9VNj3pQmD2UCofJ9AVopd_RobuhzdPlx2GiWYepxAX9VLRLrNdMcu6ok/s1600/548654_4583395979157_1365212774_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiwWxAudPwH8FylLTIPHAizCPoateMahTB3ehXL3_nZiMuAvLSdaGIv0U3eMzSOItZVFdcpEdorA6z6QJ2pWybg9VNj3pQmD2UCofJ9AVopd_RobuhzdPlx2GiWYepxAX9VLRLrNdMcu6ok/s320/548654_4583395979157_1365212774_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Me in the stocks at Cardiff Castle (pic taken by Virginia)</td></tr>
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We spent the whole morning at the castle. The eeriest bit for me was walking through the secret tunnels within the outer wall of the castle. These were used in World War 2 as air raid shelters for the towns folk. As you walk through them, there is an old radio broadcast playing Dame Vera Lynn's song We'll Meet Again and real recordings of bombs being dropped. All through the tunnels there are signs about putting on your gas masks, benches for sitting on, bays with beds in them and a soup kitchen. I am so glad I didn't have to live through that.<br />
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After the castle, we did the city tour via the Hop on Hop off bus. Virginia had never been on one of these before which made me laugh cos as a tourist it is the <i>first</i> thing I would do. Holly and I make a point of going on these buses in every city we visit. It gives you a more in depth insight into the place you are visiting and your ticket is valid for 24 hours so you can hop on and off as much as you like.<br />
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Next we visited the National History Museum. We spent over two hours in there looking at wales in ancient times, fossils and dinosaurs. By the time we came to the art section I was getting restless.<br />
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Looking at some of the modern art, I was bemused to say the least. Some of it looked like it had been made by toddlers! I jokingly said to Virginia, that if this was modern art, then someone like me could easily create a masterpiece. All I had to do was pee, poop, bleed and vomit on a canvas, call it Life's A Bitch and I would win the frigging Turner Prize!!!! I laughed so hard at my own joke, I nearly peed myself!<br />
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The jokes didn't end there either. After wandering through paintings of landscapes, buildings and splashes of colour that didn't look like anything, we finally came to the historic art section which was full of portraits by 18th century welsh artists.<br />
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We had looked at quite a few, when I happened to mention that the men were a bit pale and feminine looking in those days, a bit puffy around the face and really not eye candy at all! We had quite a chat about this, so much so, that we actually sat down on a bench to discuss it further when after a pause I said "I bet they had tiny penises too!"<br />
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I thought Virginia was gonna die laughing as she spluttered "how did we go from them being feminine and pale to talking about the size of their penises!!!! Who makes that kind of leap in their thinking?"<br />
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Emmmmmmm....well that would be me!<br />
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She said this so loud that people's heads whipped round so fast, giving us such a look, it was comical. I was nearly crying with laughter and it got worse when I came across a painting a minute or two later in which the poor unfortunate man was so <i>not</i> bonnie! I grabbed Virginia and said "don't look at that one, he looks like he fell out of the ugly tree and hit every branch!!!"<br />
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The two of us were helpless with laughter and were getting quite a few looks so we thought, maybe it is time to leave. Who knew you could have so much fun in a museum?<br />
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We were only there for 3 days but we packed as much in as we could. We had afternoon tea at a lovely little cafe by the park with tiny sandwiches and scones, served with fruit tea and a slice of cake. Just heaven.<br />
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We wandered through the <a href="http://www.visitcardiff.com/shopping/historic-arcades">Historic Arcades</a>, peeking in designer boutiques, cute little cupcake shops and lots of other unique little stores. We spent a morning wandering around Cardiff Bay, caught a glimpse of the BBC Wales studios where Casualty and Dr Who are filmed and wandered around a really gorgeous craft shop where we both could have spent a fortune on jewellery if <i>only</i> we had the money.<br />
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If you ever get the chance to visit, you should. The place is lovely but what makes it special are the people who are so friendly and welcoming.<br />
<br />
But all good things must come to an end. Heading home was fairly uneventful until I lost my phone getting into the car at the airport. My dad drove off with me hanging out of the car trying to catch the door and it probably fell out then. I retraced my steps but alas, the phone had disappeared into the big blue yonder, taking with it all my contacts, photos and events in my calendar. I was extremely upset but what can you do apart from phone your insurance and get a new one!<br />
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I am barely home a week and Jack is unwell again hence the reason I am up so late. It is now 1.30am and Jack has finally given up that urine sample I was after and is again sleeping peacefully.<br />
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Now I just hope that the rest of the night continues that way. Hope all is well in your world my little gigglers.<br />
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Lyndylouhttp://www.blogger.com/profile/18133867788700520182noreply@blogger.com14tag:blogger.com,1999:blog-610184634972072534.post-33567927507421663782013-02-07T11:01:00.000+00:002013-02-07T11:01:19.923+00:00Naturasil cured me of my witchy afflictions<div dir="ltr" style="text-align: left;" trbidi="on">
Last year while Jack was in hospital, he developed a wart on the wrist of his left hand. It wasn't a problem at first but then it grew really big.<br />
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I tried one of the over the counter remedies which involved freezing it but as soon as I put it on, I could tell that it wasn't painless and he wasn't a happy boy. As it didn't work anyway, I sought advice from his Health Visitor and the advice given was to put duct tape on it for 7 days, remove it, file the wart down and repeat.<br />
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You can imagine my face when she told me this but I will try anything if it is going to work. The duct tape didn't even last hours, never mind days! That boy of mine was so sneaky at getting it off, all without pulling at it. I found duct tape stuck to everything, including the dogs but not to be outdone, I kept at it. After 3 days I gave up!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNNqVDqVlMXg42WemmHSCH6mdVFtv4zNhZ77TRicTtiY1Ze2RVED8QBAAlqi2YaBbk1YI1cjInwd2siBc5dg80QBI_H0eOCeWYpjrz4OUm8-_ue3gKJ4zJ718hQE8gkfyGPjUH0dfGVLP0/s1600/download.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNNqVDqVlMXg42WemmHSCH6mdVFtv4zNhZ77TRicTtiY1Ze2RVED8QBAAlqi2YaBbk1YI1cjInwd2siBc5dg80QBI_H0eOCeWYpjrz4OUm8-_ue3gKJ4zJ718hQE8gkfyGPjUH0dfGVLP0/s1600/download.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">who would have known this would be a remedy?</td></tr>
</tbody></table>
<br />
I didn't really know where to go from there so I left it a while. Then one day, I noticed a spot on my face, not far from my lips. On closer inspection, after trying to squeeze the damn thing to get rid of it and only causing myself pain, I realised it was <i>a wart! </i>Aaaaaahhhhhhhhhhhhhhhh!<br />
<i><br /></i>
I was horrified! I knew straight away that Jackyboy had passed it on to me and I even knew how. I am always putting his hand up to my face and kissing it so it was only a matter of time before he shared the love.<br />
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It looked huge to me and I was convinced that every body could see that I had turned into a warty old woman over night! Whilst visiting Holly at Uni, I pointed out my affliction and gave her my woes while she fell about laughing, saying it didn't look that bad. <i>But it did!</i><br />
<i><br /></i>
That damn wart taunted me from the mirror, practically grew arms and waved at me every chance it got and I was convinced that people were staring at it when they talked to me.It seemed to grow bigger every time I looked at it. If I didn't know better I am sure it was laughing at me.<br />
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After an evening where I swear it doubled in size, fluffing up like bloody mushroom, I decided to take action. As it was on my face, I knew I couldn't burn or freeze it off so I had to find something more natural.<br />
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Surfing the net, I came across a product called <a href="http://www.naturasil.co.uk/naturasil-warts-15ml/">Naturasil</a>. It was a homeopathic treatment which claimed to get rid of all types of warts. It cost £24.99 for a tiny bottle that claimed to get rid of the nasty bugger that afflicted me without pain or scarring. I found that hard to believe but really people, I was desperate to be rid of my new unwanted friend so it was a small price to pay.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjL6iyXq4hnN4yGdf8fXgEv6b2B3gcA1VKldDPCoEcMbL2Ph-46zWQKFBE_19oe00YIbGZjGCkeQn6atcQOVQcZGqFQZdb91Ql6Z25_Br9-zOXBhk4yMaQzlwOsqXgYZ5J-GUQhhVaNO7Od/s1600/20130207_102926.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjL6iyXq4hnN4yGdf8fXgEv6b2B3gcA1VKldDPCoEcMbL2Ph-46zWQKFBE_19oe00YIbGZjGCkeQn6atcQOVQcZGqFQZdb91Ql6Z25_Br9-zOXBhk4yMaQzlwOsqXgYZ5J-GUQhhVaNO7Od/s1600/20130207_102926.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The box is a bit dog eared, a sign of a lot of use</td></tr>
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<br />
The instruction said to apply it 3 times a day over a 3-6 week period. I tried to follow it to the letter but sometimes I would forget and only apply it once or twice. I saw no change in my "not so little" friend for the first few weeks but then suddenly out of the blue, it seemed to have shrunk and wasn't so hard, less warty. Excited I kept at it until one day.....it disappeared!<br />
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How can it be there one day and then just poof? Gone into thin air. I inspected my face all over for signs that it hadn't gone just merely migrated to new pastures but no, it really had gone. I literally screamed, punched the air and did a wee dance around the bathroom. So chuffed was I that I text Holly to tell her that my affliction had buggered off!!! Mmmm great text to get from your mum eh? She was like "emmm, ok, that's great".<br />
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I should have had the foresight to take a before and after pic but I am really not <i>that</i> organised.<br />
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So now that I knew that it didn't hurt to use and didn't cause scarring, I set to work on the main man, Jack's nasty little friend. He was a lot more resistant to the whiles of Naturasil and it has taken a lot longer to see a difference but his hard, lumpy, warty friend is almost gone but not without a last act of rebellion, the little b**tard! Now we have a smaller friend sprouting up next to the original one but I am on him, armed and dangerous with Naturasil. That sucker is going down!!!<br />
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So now Naturasil is my new best friend. This skeptic has been won over, well and truly.<br />
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Now this stuff works on skin tags and verrucae too apparently so now I am trawling my body looking for any. I feel a bit like Lady Macbeth....out damn spot! Out I say! (See, cultured too. I am a woman of many talents..not).<br />
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Now I can go out, safe in the knowledge that my little friend can no longer yell and wave at people as I pass by. I am not vain but you have no idea how happy that makes me.<br />
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Oh the trauma!<br />
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Lyndylouhttp://www.blogger.com/profile/18133867788700520182noreply@blogger.com29tag:blogger.com,1999:blog-610184634972072534.post-73237522946784856782013-01-27T12:31:00.000+00:002013-01-27T12:32:04.762+00:00On the brink of Insanity!<div dir="ltr" style="text-align: left;" trbidi="on">
Last year I had two very surreal moments when I feared for my sanity!
The first one happened the first week of January, 2012. After two months of hell and suffering, I had finally managed to persuade a doctor to transfer Jack out of Aberdeen Sick Children's to Edinburgh Sick Children's Hospital.<br />
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We were due to be transferred on the Thursday morning so Wednesday was a day of tying up loose ends and packing up stuff.<br />
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One of the complaints I had made was re Jack's wheelchair. I had asked a nurse the very first week we had come into the hospital if she could ask someone from wheelchair services to come and have a look at Jack in his chair, as he was getting zero support due to the deterioration of his scoliosis.
Every week that went by, I asked again and was fobbed off with many excuses so no one came to see us.<br />
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The day before our transfer, 8 weeks later, a nurse came over to tell us that she had phoned wheelchair services and the first available emergency appointment was in 6 weeks time!<br />
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It was the final straw for Granny Mac, who promptly burst into tears. As soon as she started to cry, I started laughing. I don't know who was more shocked, her or me! I laughed and laughed, til tears rolled down my face, my stomach ached and I thought I was going to be sick.
I looked up in the middle of this hysteria to find the very bewildered faces of Granny Mac, the nurse and Val from Chas at Home looking at me like I had totally lost the plot!<br />
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The more Granny Mac cried, the harder I laughed. Through her tears she asked in a shocked voice "why are you laughing? Stop laughing, it's not funny!" This just made me howl with laughter all the more. I was totally creased up, bent double and was laughing so hard I literally couldn't breathe.
Eventually I managed to splutter "you really need to stop crying cos the more you cry the more I laugh".<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7nA_qIq8VXs9wP2nQPmbz60-JRYviInmZC2dUadKu2soU_uJfxhZywjjfhdaIaiXHItS1hZXsGxTzJVKIMk6d-wy52V_wmX4w1nWdAzfKClolzijUQr24h4EnNxejV49o4JZfFwVL0D56/s1600/SDC11135.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg7nA_qIq8VXs9wP2nQPmbz60-JRYviInmZC2dUadKu2soU_uJfxhZywjjfhdaIaiXHItS1hZXsGxTzJVKIMk6d-wy52V_wmX4w1nWdAzfKClolzijUQr24h4EnNxejV49o4JZfFwVL0D56/s320/SDC11135.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Even Jack thinks it's funny!</td></tr>
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<blockquote class="tr_bq">
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She looked incredulous at me as if I had gone mad! Then through her tears she went on a rant about how outrageous it was that an emergency appointment could take that long. This sent me into more bouts of hysterical laughter til I was a helpless, blubbering mess hanging onto the edge of Jack's bed.<br />
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I did manage in the middle to blurt out "if I had been given that appointment when we came in, I would have had it by now!" before dissolving into fits of giggles again.<br />
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I laughed like that for well over an hour and throughout the rest of the day, I would dissolve into fits of laughter for no reason whatsoever and at some of the most inappropriate times too.<br />
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Fast forward to June, when finally Jack has had his Fundoplication after two cancellations, been on continuous feed for 18 hours a day for 7 months, suffered a broken leg and severe oesophogitis, stopped breathing numerous times, suffered 100's of seizures, aspiration pneumonia twice and the countless other things that had happened in that 9 months. He was finally back to being fed into his stomach instead of his jejunum and I had finally started to see the end of this nightmare.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbPTOrUs2LulGM4XHSsatBzs2JZgYu8CbRxw6xGjefyzfMGdHlP7L8nFKieL9X-KJGCUrLFKjxAFnfxZ6IeqjTwEKvmm62fU8bGvShqXMEcFbqQS-JbIM8d_ZRRa_H7QKSGGFU0wVkhwov/s1600/20120611_193619.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbPTOrUs2LulGM4XHSsatBzs2JZgYu8CbRxw6xGjefyzfMGdHlP7L8nFKieL9X-KJGCUrLFKjxAFnfxZ6IeqjTwEKvmm62fU8bGvShqXMEcFbqQS-JbIM8d_ZRRa_H7QKSGGFU0wVkhwov/s320/20120611_193619.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">After his fundoplication</td></tr>
</tbody></table>
<br />
After driving 4 hours to get home from the hospital I was shattered but happy to be home. Jack was still in plaster and his feeding peg was not yet a button but things were far far better.<br />
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Marion, Jack's carer was in looking after him so that Holly and I could have our tea. At 7pm we were getting him ready for bed. We had gotten most of his meds into him but when it came to putting in the last one, the peg was blocked! After trying to unblock it, I could feel the panic rising. We tried for over an hour to no avail; it was blocked solid.<br />
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I phoned Edinburgh for advice and the nurse told me to keep trying and call her back. I was shaking, crying and inconsolable. This was catastrophic because this was not a peg I could change myself and I had visions of having to get back into the car and drive the 4 hours back to Edinburgh. I kept saying to myself "no, no, no, no, no NO!" over and over. Poor Marion and Holly didn't know what to do with me so I asked Holly to call Granny Mac because in my mind, she was the only one who would understand what a disaster this truly was.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgolccNfrFqkOIJ1oY-vrGPyna_eY2Q0Y65WgDT1uSM-wlPljaYbfuUaIKeJOkxPHr9liuS53jekdeF-ynNj7CJ8IIHbXn5BJDNG2GgNO1LreF2_EKk922ESCFNid6dT4h6DLoOmfbX8V0B/s1600/20120821_201735.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgolccNfrFqkOIJ1oY-vrGPyna_eY2Q0Y65WgDT1uSM-wlPljaYbfuUaIKeJOkxPHr9liuS53jekdeF-ynNj7CJ8IIHbXn5BJDNG2GgNO1LreF2_EKk922ESCFNid6dT4h6DLoOmfbX8V0B/s320/20120821_201735.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">If it had been this type of peg, it wouldn't have been a problem cos I could have changed it myself!</td></tr>
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We tried for another half hour after she arrived to unblock the damn peg! Everything we tried to flush down it, just exploded out of the other syringe portal. Marion, Jack and I were soaked. Granny Mac was trying to help but often just got in the way. I felt like screaming! I lurched between crying hysterically and total silence! The only saving grace was that Jack slept through it all!<br />
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I called Edinburgh again and was told to take him to our local hospital. We had to hoist him back into his wheelchair and into the car. On the drive up, I was so distressed that I told Granny Mac exactly what I thought of her son, Father of the Year! I held nothing back. By the time we got up there, I couldn't breathe and was having chest pains. Poor Granny Mac was crying too as she just didn't know what to do with me<br />
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Marion met us up there and we went straight to the children's ward. We spent hours in the treatment room with numerous people trying to unblock that damn peg but it was not to be. The said we would probably have to go back to Edinburgh the next day and I told them "well you will have to take him, cos I am not going!". They tried numerous times to get a drip into him as well but his veins were crap which distressed me all the more. Bloody hell, had he not had enough? I cried most of that time with Marion getting permission to bring me cups of tea, which believe me, is NEVER allowed in the treatment room! Marion left at 11, three hours after her shift should have finished. It was her wedding anniversary too!<br />
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They managed to persuade me to sit in the parents room for a while but then they called me back because they needed to get a drip into Jack otherwise he would be dehydrated. Granny Mac was getting upset again so I knew that I was gonna have to pull up my big girl panties and just face it so back through I went. It was after midnight by then and I was rung out. I persuaded Granny Mac to call her husband and go home cos she looked as bad as me. Lynette stayed as she was going to be staying with Jack overnight. Just after 2 am we got Jack into a room on the ward. The drip was in but the peg was still blocked. I kissed him while he slept on, oblivious and went home.<br />
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I woke up the next day, feeling as if a huge weight was sitting on my chest. I ached everywhere. I rolled out of bed and saw that I had a text from Lynette saying that she wished she had good news to impart but that things were still the same.<br />
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I dragged myself up to hospital, resigned to the fact that I was probably having to drive back to Edinburgh.<br />
Oh joy! But there was a glimmer of hope. A doctor was called and he said he probably could replace it, as it had been a week since it was put in so it should have healed and meshed now. I suggested he call the surgeon in Edinburgh to check just in case. He then spent the next hour trying to unblock the peg too, putting wire down it but the damn thing just wouldn't budge.<br />
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Granny Mac came to visit and the two of us sat with Jack.I apologised for losing it the night before and she said it was perfectly understandable! Eventually at 1.30 pm the doctor appeared and changed the peg. When he took the blocked one out he showed us what was causing the blockage. There was a solid lump of white which turned out to be calcium, the supplement he was getting to help his <a href="http://lyndylou-whocares.blogspot.co.uk/2012/04/its-all-broken.html">broken leg</a> heal! He had only been on it a week and a half but since it had been given with all his other meds, it had just slowly attached itself to everything until one day it became rock hard! Who'd have thought?<br />
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I was so relieved!<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmPh1umFd1YRDFF2dykpGoE2I1w06EajM2hlc0QhLb4ZVsxKeT9bYaSClDgUjfzol2WwXJ_60zcJqwmiTMb0LclVyUE3ULE8zwshV77rWm7a12xtCOgZcW3IsAtNDuElmP5uFs4rR0dtaL/s1600/547682_4351917443163_1382172198_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhmPh1umFd1YRDFF2dykpGoE2I1w06EajM2hlc0QhLb4ZVsxKeT9bYaSClDgUjfzol2WwXJ_60zcJqwmiTMb0LclVyUE3ULE8zwshV77rWm7a12xtCOgZcW3IsAtNDuElmP5uFs4rR0dtaL/s320/547682_4351917443163_1382172198_n.jpg" width="238" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ah happiness at last.....my old friend Red!</td></tr>
</tbody></table>
<br />
After I took Jack home, it took me weeks to recover from my melt down. I now know that it was the final straw after 9 months of hell and holding it together.<br />
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So please tell me I am not alone?<br />
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Lyndylouhttp://www.blogger.com/profile/18133867788700520182noreply@blogger.com31tag:blogger.com,1999:blog-610184634972072534.post-23236498043844387372013-01-14T22:40:00.001+00:002013-01-14T22:40:28.143+00:00Would you work 100 plus hours a week for pennies?<div dir="ltr" style="text-align: left;" trbidi="on">
I have always believed that laughter is the best medicine and I have been getting it by the bucket load since Holly Dolz came home for Christmas.<br />
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She is the person I get to be childish and totally daft with. Last Saturday we were out and about trawling the D.I.Y shops. We were fed up looking at paint and wallpaper so we had a drive around before going to the last shop.<br />
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We had the new Fun cd playing in the car and we had been dancing and singing at the top of our voices. We pulled into the car park of B & Q where we had a mad 5 mins, dancing and singing in the car. No one paid us any attention which made us laugh all the more! Holly was doing this crazy kind of dance with her hands flailing in the air, head shaking forwards and backwards and honestly she looked like she was having some kind of seizure!! I was crying with laughter. I think even Jack would have laughed if he had been there.<br />
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The giggling continued while we shopped and all the way home. As I was trying to reverse the car into my drive, we were giggling and laughing then she said something that made us both laugh so hard that neither of us could get breath! So there we were halfway across the road, blocking both sides, unable to speak, helpless with laughter and tears were running down our faces. We must have been blocking the road for over 5 minutes!<br />
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Truly she is the best tonic for me.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7qfEatnfjZBGsNYLjwTyFuhZa9s-vZY11cVsL-qg00W0uZ9q-v8riXn_Gac4GkCBG5JdvqT5vFs3efWVhjChse9TExuLaQut0krSQFOgRpXdDvbcoxxta08ItTrtDglgRAaNvR-uZqTae/s1600/20121217_181318.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj7qfEatnfjZBGsNYLjwTyFuhZa9s-vZY11cVsL-qg00W0uZ9q-v8riXn_Gac4GkCBG5JdvqT5vFs3efWVhjChse9TExuLaQut0krSQFOgRpXdDvbcoxxta08ItTrtDglgRAaNvR-uZqTae/s1600/20121217_181318.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Funny girl</td></tr>
</tbody></table>
<br />
Jack hasn't had a great week. The seizure monster has been out to get him. Friday was the best day as he was able to sit up and roll around on the floor. For Christmas, I bought him some clip together mats but still he manages to split them and this means his skin gets rubbed on the carpet. When I was putting him to bed last night, his wee knees were red from trying to get up and his knuckles on one hand were red too.. A bit of moisturiser and this morning they were as right as rain.<br />
<br />
When he came home on Thursday he was sleepy from a seizure so I hoisted him onto his beanbag where he lay listless and lethargic. I took this opportunity to get in there for a cuddle, a wee sing song and some tactile play. He rewarded me with such a heartbreakingly beautiful smile that I had a lump in my throat but then the magic was broken as he literally tried to climb out of the bean bag. No mean feat, believe me!<br />
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He is such a precious little boy. Mind you he is so not little these days...that boy has been sprouting chin hair for months. I have resisted the urge to start shaving but it looks like the time has come.....oh my god....how do you shave a guy??? Answers on a postcard please....<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhr37uEBpOoeDg4G5hNq0eMq1UiAaTbOCaJ43k0plILNVVKbFsM7nSBQ3IokkxgAMEXkxIe1LX05yazqbaUv0BVyx0UN5yEfinkKTVH0IRoGLpdU50dkQaHjm6hfsJBK4_EdDBIDkcxXkkq/s1600/20130110_161922.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhr37uEBpOoeDg4G5hNq0eMq1UiAaTbOCaJ43k0plILNVVKbFsM7nSBQ3IokkxgAMEXkxIe1LX05yazqbaUv0BVyx0UN5yEfinkKTVH0IRoGLpdU50dkQaHjm6hfsJBK4_EdDBIDkcxXkkq/s1600/20130110_161922.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Gorgeous boy</td></tr>
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Recently, with all the stuff in the news about cuts to benefits for people with disabilities I am beginning to wonder at times how I do actually manage to keep smiling. Then someone mentioned families like me who are a drain on the state and it is enough to make me want to scream.<br />
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I don't actually get that much from the government and when Jack happens to be in hospital for too long, the little I get is taken away from me as it is deemed that the hospital is essentially doing my job for me. This is such a lot of bullshit!<br />
<br />
Most parents of children with a disability like Jack's are unable to leave their children all day every day in the care of nurses as they do not have the time to give him the kind of care and attention he needs. It costs parents more when their child is in hospital as although often their room is free, cooking facilities are very basic, just a microwave and we all know how much microwave meals cost! Then there is the constant travel when your child is not in a local hospital. On top of that you are still running a home cos your other child is being looked after by someone in your house. I could go on and on but really, what is the point?<br />
<br />
So I thought I would give you just a wee sneaky peak into my world.<br />
<br />
Looking after Jack, although a lot of work, is by far the easiest part of caring. I love him so therefore it is not a chore. The stuff that gets me down is the endless shit that goes with that. There are so many people involved in Jack's life, many people coming in and out of the house, lots of appointments, meetings, therapies, school. Often the appointments are a few hours away which takes up a whole day. Then there are the everyday niggles that school and respite have, that seem huge to them but make me think....."what NOW?"<br />
<br />
Everyday Jack goes to school with a feed pump, feed, suction machine, school bag, magnet for his VNS, seizure diary, school diary, protective helmet, his soft collar for his neck, a spare peg in case his falls out and his emergency meds with the protocol. If I forget any of this it means I have to trudge off to the school to hand it in.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBi0lMjlojD9uCIiAAlZjoPtzVic3D8HyaWnSCijEjIoLyKTx0o4XNvsSR028Pk5OYjc7mi7QgssUJ563BbbWyEh3MeJKjWwmU4o36A1cTETlZfwSxaCAlv-7XjfTXw-FsI23ANL1AJ6E9/s1600/20120720_114605.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjBi0lMjlojD9uCIiAAlZjoPtzVic3D8HyaWnSCijEjIoLyKTx0o4XNvsSR028Pk5OYjc7mi7QgssUJ563BbbWyEh3MeJKjWwmU4o36A1cTETlZfwSxaCAlv-7XjfTXw-FsI23ANL1AJ6E9/s1600/20120720_114605.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jack's daily medicine box</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigldRagMQDDCsW7_xSExMlOUcRbTMRUGT-KuAKUWrpX-vrd2nzexnvhLrVZl5ae0E6MhWXXlICVR4SJKpzkRmCRDveN_EI04s2BlYtDAaxBxsuqdYI-P1ya0gME1WPRPCyfXBoopgLeIH9/s1600/20120720_114615.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEigldRagMQDDCsW7_xSExMlOUcRbTMRUGT-KuAKUWrpX-vrd2nzexnvhLrVZl5ae0E6MhWXXlICVR4SJKpzkRmCRDveN_EI04s2BlYtDAaxBxsuqdYI-P1ya0gME1WPRPCyfXBoopgLeIH9/s1600/20120720_114615.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Some boxes are inside others and on top of others to make them fit!</td></tr>
</tbody></table>
<br />
As well as that I have to be in for deliveries of all his feed, syringes, sterile water, pads etc then unpack it all and find places to put it. Jack's bedroom often resembles a storage room with boxes piled up. I have to constantly keep on top of what medication he still has, what's required and it seems every week I am ordering something or other. On top of that I have to get the spare equipment for his suction machine from another source so constant juggling and remembering things are the name of the game. Forgetting a medication is a disaster on an epic scale as most of his epilepsy meds have to be specially ordered.<br />
<br />
His bed is constantly plugged into the electricity and nightly I have to make sure his hoist, feed pump and suction machine are charged. My electricity bills are not your normal household bills and my heating is just as bad as it is really important to keep him warm.<br />
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A set of bedding gets washed every day along a v pillow cover, a protective mat and at least two sets of pj's. I only get so many syringes so they have to be washed and reused. I have to say, in all, this is the job that sucks my will to live the most! Tee hee hee.<br />
<br />
When I pack a bag for him to go to respite, it takes me nearly two hours as all his clothes have to be labelled and listed. All equipment going with him has to have their chargers with them and I have to make sure there is just the right amount of feed, syringes etc with some spare in case of accidents. Medicine has to be counted out as you can not give them too much, just enough for the doses while he is there and then again, some extra just in case.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghOW-1v2mT2t6RPeQNtgf8TkdVZwvJqRnHn4mVhTJ4x0YkahUdKZZGScUn2gYQhZ7d8Qy-f3vKs0MQ5Ht_59Ad5fDN1s7HLPBYvpSyg__LF6RXsIJwr-gNj7KffVIzTaXI_PLmr5cRdXXP/s1600/20120720_114520.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEghOW-1v2mT2t6RPeQNtgf8TkdVZwvJqRnHn4mVhTJ4x0YkahUdKZZGScUn2gYQhZ7d8Qy-f3vKs0MQ5Ht_59Ad5fDN1s7HLPBYvpSyg__LF6RXsIJwr-gNj7KffVIzTaXI_PLmr5cRdXXP/s1600/20120720_114520.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Guess who this belongs to?</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnTGV_N0DRbq_hCnpJekQ4iWYvAepncoRujash0JC9jsVjSJXV1mDWsfD_CjmDhyWhHVzXrONO8B-WI0BpkrNYKsWvjox3q9Y-1nP4k0mIfzE7UNE_6h2SAQ-ofvzuGsfjJS_3_lGfKnZC/s1600/20120720_115223.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjnTGV_N0DRbq_hCnpJekQ4iWYvAepncoRujash0JC9jsVjSJXV1mDWsfD_CjmDhyWhHVzXrONO8B-WI0BpkrNYKsWvjox3q9Y-1nP4k0mIfzE7UNE_6h2SAQ-ofvzuGsfjJS_3_lGfKnZC/s1600/20120720_115223.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is one half of Jack's respite bag, this part is full of feed, syringes, pads, etc</td></tr>
</tbody></table>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEim8fDdmZf1yP5Kz2rhvJrNyOs2PCHpIOYck4mjUgLTol8t-ACXf3H0HSApxcl1jRjLWTwTMWwF_6mQW14AH0nfOZFYJCOCL5ZPvMY2k7oBmp_Lr0sJuIHLMSvSaCg2TWCyUf7-vIdnahhV/s1600/20120720_114051.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEim8fDdmZf1yP5Kz2rhvJrNyOs2PCHpIOYck4mjUgLTol8t-ACXf3H0HSApxcl1jRjLWTwTMWwF_6mQW14AH0nfOZFYJCOCL5ZPvMY2k7oBmp_Lr0sJuIHLMSvSaCg2TWCyUf7-vIdnahhV/s1600/20120720_114051.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is the other half filled with clothes</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2wD_6ovXmUPlCjTF3vqJn6mEVhzrXXoLqwoxlbiEsemU2iwE8r8NyYQwvOcbRL5hYX2T3eEG_Uu93RwBJq_T97x1sGPZ-nmUwLnb-8elgaf7CzP4_shcbrI2IvvnKI4cuwpLpcBb4Ny0-/s1600/20120720_115423.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi2wD_6ovXmUPlCjTF3vqJn6mEVhzrXXoLqwoxlbiEsemU2iwE8r8NyYQwvOcbRL5hYX2T3eEG_Uu93RwBJq_T97x1sGPZ-nmUwLnb-8elgaf7CzP4_shcbrI2IvvnKI4cuwpLpcBb4Ny0-/s1600/20120720_115423.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is the two parts joined together ready to go</td></tr>
</tbody></table>
<br />
I am on constant call from the school and respite so my mobile and I are practically joined at the hip. Respite doesn't mean "let's party!" it's more likely to be "let's collapse!"<br />
<br />
If I was in full time employment, I would actually be working nearly three 40 hour week jobs? No way on earth would an employer be allowed to work you that hard yet it seems the government think you should and save them a fortune.<br />
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What do you think?<br />
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Lyndylouhttp://www.blogger.com/profile/18133867788700520182noreply@blogger.com25tag:blogger.com,1999:blog-610184634972072534.post-82867723037418220992013-01-06T13:26:00.004+00:002013-01-06T13:27:23.191+00:00So what does 2013 hold for you?<div dir="ltr" style="text-align: left;" trbidi="on">
Happy New Year everyone.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQTXJRW03rwpS0uA2uDRiJ4Ev_E7kCKVAvOdImZaumBLDSqEsSyetQQwIp_gWvbYp9rxgmJHYAarC6HWytsNnqzS7p6smZbZGUcvghUSQJC5RQV7YrSazb4HpH2XMfeVaH-C4zOs-Y9ddG/s1600/20121231_234402.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQTXJRW03rwpS0uA2uDRiJ4Ev_E7kCKVAvOdImZaumBLDSqEsSyetQQwIp_gWvbYp9rxgmJHYAarC6HWytsNnqzS7p6smZbZGUcvghUSQJC5RQV7YrSazb4HpH2XMfeVaH-C4zOs-Y9ddG/s1600/20121231_234402.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Happy New Year</td></tr>
</tbody></table>
<br />
I hope you all had a fantastic Christmas and that 2013 will be good to you all.<br />
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Have you made any New Year Resolutions? I usually don't unless I know for sure I can follow through. This year I have made two promises to myself. One is to try and write more letters. That doesn't sound too difficult but when we are living in an age where sending a text or email is so much quicker, it's not as easy as you think. Plus I miss that buzz you get when an actual letter as opposed to bills, leaflets etc drops through your door. The last time I got regular letters was when I lived in Canada for 3 months and that was 14 years ago!<br />
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The second one is an idea I saw on Facebook. You basically take an empty jar at the start of 2013 and every time something good, happy or funny happens, write it down and pop it in the jar. Then at the end of the year, open it up and read all the great things that happened in the year. Simple but lovely.<br />
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We had a lovely Christmas. Going to Rachel House was just the tonic we needed before the madness began. Christmas Eve was very chilled and we spent the evening watching our favourite Christmas film The Muppet Christmas Carol. I love the soundtrack and had been singing it for weeks much to everyone's disgust!<br />
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Holly and Jack both opened a present from under the tree on Christmas Eve a tradition in our family since I was little. Jack opened a present he was sent from Dreams for Emily in the USA. This is a charity set up by the parents of a child who has a similar diagnosis to Jack. For the last two years they have sent gifts at Christmas to children just like Emily. Such a brilliant thing to do.<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjw5lm_9J2BXfjN4nOoVvMSGZerovNlPPzfAuviebgjtA2S_z1D3uqtYMIXF-guBmwbGReNWJ1NEU89EtPVkJ3Nt9e7t_KXojEJdRxJf7fcZoMXFIgC8ysBsTnP6Hylk6aGLUeuXmshtU29/s1600/20121224_153841.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjw5lm_9J2BXfjN4nOoVvMSGZerovNlPPzfAuviebgjtA2S_z1D3uqtYMIXF-guBmwbGReNWJ1NEU89EtPVkJ3Nt9e7t_KXojEJdRxJf7fcZoMXFIgC8ysBsTnP6Hylk6aGLUeuXmshtU29/s1600/20121224_153841.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jack opening his gift from Dreams for Emily</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrOtMlKKuKiqf1hu-3zlYsDZFsb-a3bbbAkRdezV26Tac-d737e9wK-zK5xbzDEePULiUZLAy-OdSH-M1VbEqe1PSGakfpXDPQII8neKCbBE_l29n-3RXc8wk8dodetcuzAf-Fw5wVM3_X/s1600/20121218_160634.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrOtMlKKuKiqf1hu-3zlYsDZFsb-a3bbbAkRdezV26Tac-d737e9wK-zK5xbzDEePULiUZLAy-OdSH-M1VbEqe1PSGakfpXDPQII8neKCbBE_l29n-3RXc8wk8dodetcuzAf-Fw5wVM3_X/s1600/20121218_160634.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Outside Rachel House....gorgeous eh</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUicj0ZbnNmMJQmPG2oD-XIrRqluj6Kj8RwInlDZl0SJmC6hzE2YTCxntgwUnx8vzsC_XEYFp7umCGZmwZZ-5FR2OtGChxPQrXMusDN3AuWy_tMRMS0KLMirS-3YDxbI13zA-5OS_BseYF/s1600/20121225_073654.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhUicj0ZbnNmMJQmPG2oD-XIrRqluj6Kj8RwInlDZl0SJmC6hzE2YTCxntgwUnx8vzsC_XEYFp7umCGZmwZZ-5FR2OtGChxPQrXMusDN3AuWy_tMRMS0KLMirS-3YDxbI13zA-5OS_BseYF/s1600/20121225_073654.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Holly opening her prezzies</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7AG3935Uht_iblr-MEYoXTrWqTfSdhswZdb2VILamqLO1jCpHJQro1tFC_qC5QW69ZcQnC2-aI1TCM6pli6bmSxJKwyaIhwybyqZpTNFxZ-XVFXOclFCSP3hGat7RGnriWUhu_VE0WIqj/s1600/20121225_103438.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi7AG3935Uht_iblr-MEYoXTrWqTfSdhswZdb2VILamqLO1jCpHJQro1tFC_qC5QW69ZcQnC2-aI1TCM6pli6bmSxJKwyaIhwybyqZpTNFxZ-XVFXOclFCSP3hGat7RGnriWUhu_VE0WIqj/s1600/20121225_103438.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jack opening his presents</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8r7Z8rsSPca4ai8e5cZQpQnqZkYdhq5A8hZQerRWDhtAo58U57lhzzdOsQ66glAV29hVm_Kzca50cwSPCUe-CicZ-6n6YkjAka172ZJFgcrcsOocDFSfzPgs41vlWZppJ1PWGQ_3_wz0X/s1600/20121225_104709.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8r7Z8rsSPca4ai8e5cZQpQnqZkYdhq5A8hZQerRWDhtAo58U57lhzzdOsQ66glAV29hVm_Kzca50cwSPCUe-CicZ-6n6YkjAka172ZJFgcrcsOocDFSfzPgs41vlWZppJ1PWGQ_3_wz0X/s1600/20121225_104709.jpg" height="320" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Holly helps her brother to open stuff</td></tr>
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVf754wH11jWr6W-ckE9ZO5rEujyYb3mKEaHFVsnpQ8YVMPiO2JbgFtMJO85QH_WSZegoNcvat37AB6Y5gTDI9lQAo2JehCZGX_A_KnFNtM1s8OeaccTRTQsnwF9tuxLyZ15NujKYEmnf9/s1600/20121225_182252.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhVf754wH11jWr6W-ckE9ZO5rEujyYb3mKEaHFVsnpQ8YVMPiO2JbgFtMJO85QH_WSZegoNcvat37AB6Y5gTDI9lQAo2JehCZGX_A_KnFNtM1s8OeaccTRTQsnwF9tuxLyZ15NujKYEmnf9/s1600/20121225_182252.jpg" height="240" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My two babies</td></tr>
</tbody></table>
It has been a fairly lazy two weeks and tomorrow Jack goes back to school so I have a list as long as my arm of stuff that "I must not FORGET" to send to school with him. Holly doesn't go back to Uni until the 20th so I am gonna spend as much time with her as possible and give her lots of hugs!<br />
<br />
New Year is always a time to think about the future and I now have to seriously think about writing my book along with all the other stories that are rattling around inside my head. I have to stop worrying about whether or not people will read it and just DO IT! It truly is only me who holds me back.<br />
<br />
So what are your plans for 2013?<br />
<br />
<br />
<br /></div>
Lyndylouhttp://www.blogger.com/profile/18133867788700520182noreply@blogger.com30tag:blogger.com,1999:blog-610184634972072534.post-23160260555536727132012-12-16T15:37:00.001+00:002012-12-16T15:37:26.568+00:00OMG it's nearly Christmas!<div dir="ltr" style="text-align: left;" trbidi="on">
I have been so busy the last few months but if you were to ask me what I've been doing, I would struggle to answer!<br />
<br />
This time last year I was stressed to the eyeballs with a very ill child who this year, as I type, is rolling around on the floor, trying desperately to get up onto his knees and laughing at his own attempts. I daren't say things are looking up but my Jackyboy is looking good right now.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPjagwuj7g3MDiATrzzXCvjqHmwcL-Xhm5xa0xv41rdElAjNwfTyJxh_jKFqTVZKrOg2hyfXRZkpZUMemhO_1N4a7hMa4uX1QUbjjtQbPkHL8VX5bZ3OmpcKIC15lBTVLxY7FqW2mBr5nN/s1600/205572_4919456031273_1171550250_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhPjagwuj7g3MDiATrzzXCvjqHmwcL-Xhm5xa0xv41rdElAjNwfTyJxh_jKFqTVZKrOg2hyfXRZkpZUMemhO_1N4a7hMa4uX1QUbjjtQbPkHL8VX5bZ3OmpcKIC15lBTVLxY7FqW2mBr5nN/s320/205572_4919456031273_1171550250_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jackyboy looking such a cool dude</td></tr>
</tbody></table>
<br />
Holly has just finished her first semester at University and came home yesterday. It is good to have her back for a few weeks as I was needing a "Holly" fix. I picked her up at 12 noon and within in an hour we were in the cinema watching Breaking Dawn part 2, doing the stuff we always do. She is so grown up already and much more confident than she was 6 months ago. I am so proud of her.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgG7QDBObWtPj6N7FFQkLp5ysdSkFkQF7HFG0jWbn1xX3uo5IgZaLL62t6ubP80E2KN1ecGFnGx4r4kRJIKAr06vJbrfKrNmCqwqV1Em3bOOE2N6XL8OcmIIBqDqNkpCqk3euPwx8YuEdgw/s1600/406812_4808872266748_309339618_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgG7QDBObWtPj6N7FFQkLp5ysdSkFkQF7HFG0jWbn1xX3uo5IgZaLL62t6ubP80E2KN1ecGFnGx4r4kRJIKAr06vJbrfKrNmCqwqV1Em3bOOE2N6XL8OcmIIBqDqNkpCqk3euPwx8YuEdgw/s320/406812_4808872266748_309339618_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My grown up babies</td></tr>
</tbody></table>
<br />
My house has been quieter without her but Virginia has been a huge help in keeping me company and making me laugh. She flew home for Christmas yesterday and one of the last texts I received from her went like this "About to board flight. I think I found a man for you, SERIOUSLY!" This made me howl with laughter as it is a standing joke that I don't actually notice guys much unless they are so in my face, I can't ignore them. It's not that I am not interested so much as I am well out of practise when it comes to the male species!<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhX-oUYBeyqcfMlpIssdcFo1yHqjW5S1vIrAaQgw1TLmZo7lQ7CInQsulbkCU4-RONainUBPE0c6yiUmgK0yjkMBXaGRDld4WZe1AgWmsJcZJ9PUtjTl4_RJyUxe9JvxwF8k7HvyBjFhf7O/s1600/63337_4883672136698_1305375017_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhX-oUYBeyqcfMlpIssdcFo1yHqjW5S1vIrAaQgw1TLmZo7lQ7CInQsulbkCU4-RONainUBPE0c6yiUmgK0yjkMBXaGRDld4WZe1AgWmsJcZJ9PUtjTl4_RJyUxe9JvxwF8k7HvyBjFhf7O/s320/63337_4883672136698_1305375017_n.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Virginia, having her first High Tea</td></tr>
</tbody></table>
<br />
The last few months have been tied up with the Transitions event I was part of which went really well, although there were a few stressful moments! Hopefully it will do some good and there will be changes made to the way things are done.<br />
<br />
I also had a meeting with a representative of the NHS re the treatment of Jack while he was in hospital in Aberdeen. He didn't know the full story (surprise surprise) so I took the opportunity to fill him in and by the time the meeting was over he and I had come to an understanding. My complaint was not about the nurses as they did a fantastic job but were powerless to help us as they were able to make few decisions re Jack's care even though they were the ones having to watch him suffer!<br />
<br />
He gave me details of the new procedures that have been put in place to complain, whilst still on the ward, if you have any issues with your child's care, which I asked for in writing. He said that nurses themselves can also complain now if they feel the consultant is being unreasonable which is brilliant news. Also we discussed using Jack and I's awful experience as a learning tool to teach new doctors and nurses on how to listen to parents who are essentially the experts on their special needs children. I am keen to do this because it really is time that hospitals and consultants moved away from this idea that the doctor is God and his word is law.<br />
<br />
It doesn't change the fact that Jack suffered so much at their hands but it does mean that any children and their parents coming along after Jack will hopefully have an easier time while in hospital.<br />
<br />
I have been down to Edinburgh a few times to visit Holly, made an awesome Halloween costume for Jack, been on TV (for all of 10 seconds), been to Rachel House for a week in November, taken a trip up to Skye during a really wet weekend, visited my friend Kathy in Aberdeen and been traumatised by how much her son has grown and how deep his voice has become! So much so that I keep teasing him by telling him that he's not allowed to speak when I am around! Tee hee hee.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2o4zckYsHTmCdOL9bTc9T1oin48iKmD93cD63KlvU3vGmWNxHr3FO7j3DScqZwx2OfJDdXeCtAD6QoQrAwkA5pr9AglO5iih7c194yn3tNdAvQ1U-rL2YmGAojCNsc0Ze2xiEx-SQmI0a/s1600/20121024_135905.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh2o4zckYsHTmCdOL9bTc9T1oin48iKmD93cD63KlvU3vGmWNxHr3FO7j3DScqZwx2OfJDdXeCtAD6QoQrAwkA5pr9AglO5iih7c194yn3tNdAvQ1U-rL2YmGAojCNsc0Ze2xiEx-SQmI0a/s320/20121024_135905.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Jack's Halloween costume....I turned his wheelchair into a pirate ship</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFpERy5NxIP5IYbZZrEIzCXqadiK7ql02wzqGyplXXST-pFis_iZleLiYGmzWomRX89XtOqznCfqZXsmQrHuYDNBPSYauVD6pPqqiIQzkNPN-UweYyZI1Gh-CeREcHmPd4tae-25hBGRpZ/s1600/20121024_135944.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFpERy5NxIP5IYbZZrEIzCXqadiK7ql02wzqGyplXXST-pFis_iZleLiYGmzWomRX89XtOqznCfqZXsmQrHuYDNBPSYauVD6pPqqiIQzkNPN-UweYyZI1Gh-CeREcHmPd4tae-25hBGRpZ/s320/20121024_135944.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">with pirate Jack</td></tr>
</tbody></table>
<br />
Some days I feel like I meet myself coming back! So much so that while Jack was in respite for 3 days this week, I did nothing. It was totally bliss. I soooooooo needed it too as I was just so damned tired.<br />
<br />
Christmas is only 9 days away and for the first time ever, I am organised. How the hell did that happen? Well mostly it's cos I have allowed people to help me. Virginia helped me wrap prezzies and my sister Kathleen, who is here for Christmas, has been helping with Jack and making sure I eat properly cos I am so busy some days that I forget to eat til I am nearly passing out! My New Year's Resolution is to try and have breakfast every day.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqguTlJwk_NppQmean98BRWnM0ziPi9ykKZkRY6s_h8VQ2QLrAbcnMC1jN4pDYg7gA5loQOFsMgdZ3O722mZvjOdV-E3bKXhLtsL7LxPeFiUJDXTygTcfB74vfrECw3j_8RdwipNJ_FKIF/s1600/14716_10200111073206635_820052537_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="213" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqguTlJwk_NppQmean98BRWnM0ziPi9ykKZkRY6s_h8VQ2QLrAbcnMC1jN4pDYg7gA5loQOFsMgdZ3O722mZvjOdV-E3bKXhLtsL7LxPeFiUJDXTygTcfB74vfrECw3j_8RdwipNJ_FKIF/s320/14716_10200111073206635_820052537_n.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Oops I am on the naughty list!!</td></tr>
</tbody></table>
We are off down to Rachel House again on Tues for three days. I am combining this with a visit to see Jack's Neurologist at Sick Kids so Tuesday will be a busy day. I am hoping that three days of the balm that is Rachel House will set me up for the festivities.<br />
<br />
Hope you all have a lovely Christmas.<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br /></div>
Lyndylouhttp://www.blogger.com/profile/18133867788700520182noreply@blogger.com12tag:blogger.com,1999:blog-610184634972072534.post-27123457376923294602012-10-24T09:28:00.001+01:002012-10-24T09:34:10.089+01:00She is talking shit!<div dir="ltr" style="text-align: left;" trbidi="on">
I have had a very busy few weeks but now it is the school holidays....thank god.<br />
<br />
For me that doesn't mean a lie in as such but it does mean that I can start the morning a little bit slower than my usual "hit the ground running" start to my day.<br />
<br />
These last few weeks I have managed to wean Jack off the pain killer Tramadol which he had been taking for his reflux. That went smoothly but more or less as soon as he stopped taking it, he started having looser bowel movements. This is most likely because the Tramadol can often cause constipation therefore coming off it can make things looser. Plus this is an ongoing problem with Jack and I am continually juggling medicine to keep everything regular whilst making sure he isn't constipated as this can cause his seizures to escalate.<br />
<br />
Very quickly this became a problem for the school who made a huge fuss suggesting that he had a dose of the runs and complaining about having to give him a full change of clothes twice a day. It didn't help matters that they were using the his old pads which are way too big for him and therefore more likely to leak.<br />
<br />
The teacher insisted that I come and look at these soiled pads because in her <i>expert</i> opinion, Jack could be dehydrated and need medical attention. When I told her that I knew exactly what she was talking about and that I wasn't worried as it wasn't as if he was pooping every half an hour for god's sake!<br />
<br />
For over 2 weeks I was continually harassed by this teacher about this problem even though I had explained that he had changed meds, was still recovering from his Fundoplication, had had his feed changed umpteen times in the last year, that I was no longer giving him medicine to keep him regular and that I was trying to adjust his feed to help with this issue.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://encrypted-tbn0.gstatic.com/images?q=tbn:ANd9GcRH8GD_h7XHvOHqsnkhbZMpBf5OgsX9EuXcj4SfPDMr0t22yw_E" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://encrypted-tbn0.gstatic.com/images?q=tbn:ANd9GcRH8GD_h7XHvOHqsnkhbZMpBf5OgsX9EuXcj4SfPDMr0t22yw_E" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">pic from<a href="http://www.theworshipcommunity.com/why-am-i-so-stressed-out/"> here</a></td></tr>
</tbody></table>
<br />
<br />
This teacher was complaining that Jack was spending well over an hour in the bathroom every morning getting cleaned up by two members of staff leaving her short of help. I explained that I could shower Jack, wash and dry his hair, dress him and get him into his bed in 30 mins so what exactly were her <i>two </i>members of staff doing in the bathroom all that time!<br />
<br />
I was getting so damn stressed by this teacher's continual harassment and it all came to a head on the day I was picking him up for an appointment at wheelchair services in Aberdeen. This teacher high jacked me as I was coming in to collect Jack, insisting I take a look at his soiled clothes because <i>she </i>felt there was a problem and <i>I</i> obviously wasn't willing to do anything about it, in her eyes.<br />
<br />
I was furious as I knew exactly what she was talking about, had been dealing with this problem on and off for years so I said through gritted teeth "I am already doing everything possible in the background and I am literally jumping through hoops for you to solve this problem!" I think she knew that I was angry cos she finally said "It's not about me, it's about Jack". I totally ignored her then cos this is the first time she actually mentioned the inconvenience it was having for poor Jack.<br />
<br />
I just wanted to get the hell out of there. But no it wasn't to be as this woman made sure she kept at me right up until I got to my car where she finally buggered off!!!<br />
<br />
By the time I got Jack into the car, I was that mad, I was crying! Now it takes a lot to make me cry so you can just imagine how bloody fuming I actually was. I really don't think that this woman had any idea of the self control it was taking for me not to smack her one!<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://encrypted-tbn2.gstatic.com/images?q=tbn:ANd9GcTzzrY9ddwWNQT6MbxZ31Fr325IG5so98MP4iDg2fsh331UEFFt-w" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://encrypted-tbn2.gstatic.com/images?q=tbn:ANd9GcTzzrY9ddwWNQT6MbxZ31Fr325IG5so98MP4iDg2fsh331UEFFt-w" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">pic from <a href="http://highqualitypic.blogspot.co.uk/2011/06/girl-crying.html">here</a></td></tr>
</tbody></table>
<br />
By all means, as a professional, express your concerns to a parent but when the parent is listening and giving you valid reasons for the change and asking you to wait and watch and see, then you should at least allow them that courtesy instead of coming up with your own diagnosis of something you know nothing about!<br />
<br />
I spent most of the drive through to Aberdeen in a state of rage and despair. Rage at this woman and despair because Jack was so floppy and tired while he was sitting in the back of the car in his wheelchair, that his head kept flopping forward and partially cutting off his airway. This resulted in him having periods where he was going a funny colour so I had to stop the car and put on his soft collar.<br />
<br />
By the time I got to Wheelchair Services I was distraught and quite frankly I had had enough. I felt such a fool when I got upset again explaining to the O.T. that Jack no longer has the energy to even keep himself upright and he is practically folded in half in his wheelchair these days.<br />
<br />
This, to me, is a real, bona fide <i>problem</i> as it impacts on his organs, his breathing, his muscles etc etc and to be honest is a much bigger concern to me than anything apart from the seizures.<br />
<br />
The next day I sent a new pack of pads to the school, suggesting that they use them instead and also asking them to dispose of the sterile water they were using in school as I had noticed the bag they had given me was about to expire. I was still pretty mad but we were going to be having a review meeting the next day so at least I was getting to air my feelings then.<br />
<br />
Within the hour, the teacher was back on the phone explaining that they aren't using the sterile water these days but that they would dispose of it. She also said that she was phoning to "clear the air". That's when I let her have it! I was so mad that she was trying to sort it out before this meeting that I didn't hold back.<br />
<br />
You would have been very proud of me cos I managed to get my point across and I didn't swear, not once! LOL.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://encrypted-tbn3.gstatic.com/images?q=tbn:ANd9GcS-6afBJsE_JRX8xM4S6dzdp5NtZf4dbh22wSC1EzixFardJ5evoQ" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://encrypted-tbn3.gstatic.com/images?q=tbn:ANd9GcS-6afBJsE_JRX8xM4S6dzdp5NtZf4dbh22wSC1EzixFardJ5evoQ" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">pic from <a href="http://undertheturniptruck.wordpress.com/tag/jesus/">here</a></td></tr>
</tbody></table>
<br />
She kept apologising when I said "you are actually undermining my parenting by suggesting that he is dehydrated. Do you even know what the signs of dehydration are? Do you actually think that if I thought for a minute that this was a problem that I wouldn't have called and spoke to a doctor by now? Do you even know that if I withhold the meds for keeping him regular, that he then might become constipated and could start fitting like crazy? What would you prefer; him to have looser bowels or to be 999'd from the school because of seizures? I know what I would choose!"<br />
<br />
The very next day, at the review meeting, the Head Teacher said "so it seems the bowel problem has been fixed, what did you do?" I answered "making sure the school are using the right size pads has helped hugely, withholding meds and altering the speed of his feed but these are not quick fixes".<br />
<br />
She expressed her concern that her staff were in the bathroom for so long but when I queried this, saying how quickly I could do it, I then turned to the teacher and asked "why are they in the bathroom so damn long?" She replied that "well, he often has a seizure whilst in there!".<br />
<br />
I threw up my hands saying "so it's not his loose movements that are keeping him in there so long then!"<br />
<br />
I rest my case.<br />
<br />
<br /></div>
Lyndylouhttp://www.blogger.com/profile/18133867788700520182noreply@blogger.com12tag:blogger.com,1999:blog-610184634972072534.post-33641807790201473762012-09-21T11:59:00.000+01:002012-09-21T11:59:16.277+01:00It's oh so quiet....<div dir="ltr" style="text-align: left;" trbidi="on">
A lot has happened in the last month.<br />
<br />
My new lodger Virginia has arrived from Canada and has settled in well. She is studying Scottish History and I am ashamed to say that she knows more about her subject matter than I do!<br />
<br />
Two weeks after she arrived, I took Holly to University. We had spent the week before, running around like crazy, doing last minute errands and finally the Friday morning arrived and I heard Holly bring all her stuff downstairs into the kitchen.<br />
<br />
I was in the living room, rooted to the sofa cos I totally didn't want to face it. Finally after half an hour of listening to her being ever so industrious, I wandered into the kitchen to see so much stuff that I couldn't see the kitchen floor!!!<br />
<br />
I had a moment of panic, wondering how the hell I was going to get it all into my car and squeeze Jack in as well but then my organisational skills kicked in and I started rearranging things and taking new things out of their boxes to make more room. Within half an hour, the car was stuffed to bursting and everything was held in place with bungee clips in the hope that none of it would come crashing down on top of poor wee Jack!<br />
<br />
We picked Jack up from school and off we set. Jack was most impressed with all this stuff that he could get his hands on and most of the journey he spent kneading Holly's pillows through their wrapping and he even coughed and spluttered all over them, just for good measure. He really made us laugh.<br />
<br />
We arrived at Rachel House where they took over the care of Jack allowing Holly and I some chill time. Once Jack was in bed, we went to our room, broke out the munchies and watched a movie.<br />
<br />
It was a lovely night with my girlie but we were both aware that this would be the last night for a while and there were tears and hugs and tears again. Holly didn't sleep well that night. I think fear of the unknown was kicking in and so she looked exhausted the next day.<br />
<br />
We set off around 10.15 as we were going to pick up Jacqui as she would be helping us. After a coffee and much discussion between Jacqui and Angela as to the best route to take to Queen Margaret's University, we set off to arrive in time for our moving in slot which was from 1-2.30pm.<br />
<br />
After collecting the keys to Holly's flat and room, we had a frantic 10 mins emptying the car and lining her stuff up against the wall as there was a queue of cars behind us and we had been instructed to empty the car quickly and take it back to the car park.<br />
<br />
Within an hour, everything was in her room and by 3pm we had set up her TV and printer, internet connection, unpacked, made her bed, rearranged the room to her liking and done all we could without taking over. Then we went to the supermarket to stock up on all she would need and carried it all back to her flat where Holly found space in a cupboard in the kitchen for most of her stuff and made room in the fridge too.<br />
<br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCgX-F3v_BcyWPX4AMjgNZdqXmp7UoCdYF9GkZcbsNeIJxD9Pk1_X_yqJq6BW9awOoqMKjez-jIHkUhyphenhyphenmgZsJ-ympuCohadVbGF5PxDgdVsEeotjun-Q2JOWoquisOLVactyFpZLBTI9Kj/s1600/20120908_191244.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCgX-F3v_BcyWPX4AMjgNZdqXmp7UoCdYF9GkZcbsNeIJxD9Pk1_X_yqJq6BW9awOoqMKjez-jIHkUhyphenhyphenmgZsJ-ympuCohadVbGF5PxDgdVsEeotjun-Q2JOWoquisOLVactyFpZLBTI9Kj/s320/20120908_191244.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">view from her window...door on the left is her en-suite shower</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikp7wokfOmGKYAtgW5K3pFb1IlVZGQU_6NukMO1lWtryX8IQA68gDb41aYiW6rz6EkUyXBe6KfQtiIgU7GERL-6fCvJhmjWmashLAq5iO6f6bWfhvSJa_04i22Nwbge_D1d-sODNoL1uYt/s1600/20120908_191218.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikp7wokfOmGKYAtgW5K3pFb1IlVZGQU_6NukMO1lWtryX8IQA68gDb41aYiW6rz6EkUyXBe6KfQtiIgU7GERL-6fCvJhmjWmashLAq5iO6f6bWfhvSJa_04i22Nwbge_D1d-sODNoL1uYt/s320/20120908_191218.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">view from the door</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwP7OdA9tDezNN4Wz3IYOidw2wGTStJXFLyICBzD47h2HpV5cbOetiVQk7Q2X3qshezLvlEtdKzZ6WstCrmyoUh-lS6pxayC2oMv7WT_LgBrV_SVnTVR6SipYHk_Xt7fP6u67ARah2mxNs/s1600/20120908_191238.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhwP7OdA9tDezNN4Wz3IYOidw2wGTStJXFLyICBzD47h2HpV5cbOetiVQk7Q2X3qshezLvlEtdKzZ6WstCrmyoUh-lS6pxayC2oMv7WT_LgBrV_SVnTVR6SipYHk_Xt7fP6u67ARah2mxNs/s320/20120908_191238.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Her desk...looks like she means business!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEii6O2NczszMuV9Dxx0HQas1CTjGeBuhciQo1kjdztUe5s95N8GA_zP9IT-DulNci3B_G5x3u3aA9JTOjTsPLCuI1uCDvhdqFOfxYf27Sa3-2l7hzawBVNQZ2AXRYBObdJsGv3S2gjzMm-B/s1600/20120908_191230.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEii6O2NczszMuV9Dxx0HQas1CTjGeBuhciQo1kjdztUe5s95N8GA_zP9IT-DulNci3B_G5x3u3aA9JTOjTsPLCuI1uCDvhdqFOfxYf27Sa3-2l7hzawBVNQZ2AXRYBObdJsGv3S2gjzMm-B/s320/20120908_191230.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My girlie, trying to be brave</td></tr>
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Throughout all this, she was popping in and out introducing herself to the other girls who were also moving in and generally getting to know her flat mates. In the middle of it all I had a phone call from Rachel House telling me that Jack wasn't well, had a chest infection and that they had started him on antibiotics. Around 6pm, we took her for something to eat and then we went back to her flat. As soon as we got back the tears started again and the two of us were inconsolable.<br />
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It was the hardest thing to turn away and leave her when all I wanted to do was wrap her in my arms and take her away with me. I felt like my heart was going to break but I knew that she would have the opportunity to really get to know her flat mates if I wasn't there.<br />
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I spent the night at Jacqui and Angela's partaking of some well needed wine and the next day, I headed back to Rachel House to see Jack and to pick up Granny Mac from the bus. I hadn't made arrangements to go back and see Holly as I didn't want to get in the way of any plans she may have had so had told her to text me if she wanted me to come back. I got the text at 2.20pm so Granny Mac and I headed off.<br />
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She was much happier when we went back. Granny Mac got the guided tour of her flat and university buildings. We went for a long walk and discovered more of the surrounding area of Mussleburgh, enjoying a meal in one of the local hotels before walking back and having a cup of tea in the Student Union.<br />
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I was able to leave Holly this time without tears and she seemed much more settled.<br />
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Two weeks have gone by and the house is very very quiet. I miss her so much, so I am trying to be busy so that time will pass quickly. I had no inkling that it was going to be so difficult but having Virginia in the house does help as she is good company and we get on well.<br />
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Just to add to the fun, Jack became unwell on Friday night and went into hospital around 10.30pm. Virginia helped me take his stuff up and stayed with me while he was settled in. See I told you she was lovely.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnzOG0TAesNiKh0usZJ-gwIv0uLBK9VbHs9LgD1nERwc-NKSwz1rX86SYcTAn0rsODaX4b998cq_0m3DcHL9Yd34TqhW_IGzqQxmhTc16RHl8z1FQKhhBBDzjozZNWr5NLeePJubEPoBGz/s1600/20120915_182706.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgnzOG0TAesNiKh0usZJ-gwIv0uLBK9VbHs9LgD1nERwc-NKSwz1rX86SYcTAn0rsODaX4b998cq_0m3DcHL9Yd34TqhW_IGzqQxmhTc16RHl8z1FQKhhBBDzjozZNWr5NLeePJubEPoBGz/s320/20120915_182706.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My poor boy, ill again.</td></tr>
</tbody></table>
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During the two and a half hours we were at the hospital, Virginia asked "do you get funnier, the more stressed you get?" I had never really thought about it but I do use humour a lot to cope when in crisis mode so I guess the answer was yes. Her reply "mmm well let's set fire to your house and see how funny you are then!".<br />
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Funny funny girl!<br />
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On the plus side, the house is much tidier without Holly Dolz and I am spending less time clearing up. The washing had reduced in size and I now have time to myself when the carers are in or Jack is in respite. I just have to find ways to fill the time without exhausting myself.<br />
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Virginia and I went to the Food and Drink Festival that was held in Elgin at the weekend. We had a great time wandering around tasting lots of yummy stuff and coming away with lots of goodies. There were also quite a lot of craft stalls there and Virginia had her first Aberdeen Angus beef burger. I think she was very impressed at how tasty it was.<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhP6ORPz1v39BH0tdsdECnlBMcEu9YB0trUFMG7WRu1CQoQ7_SQEZEf4jKdaO6BiThbGv4N9BjyKW14jRe3rdtVV26dZj_BNii_2C9G0vNTM10rMt7CK6fyiiArmirXb1qehK1WRQJqz5oD/s1600/20120915_131047.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhP6ORPz1v39BH0tdsdECnlBMcEu9YB0trUFMG7WRu1CQoQ7_SQEZEf4jKdaO6BiThbGv4N9BjyKW14jRe3rdtVV26dZj_BNii_2C9G0vNTM10rMt7CK6fyiiArmirXb1qehK1WRQJqz5oD/s320/20120915_131047.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Pipe Band playing at the Food and Drink Festival</td></tr>
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Next week I am taking her to <a href="http://www.ballindallochcastle.co.uk/speyside/index.cfm">Ballindalloch Castle</a> and at some point we are also going hiking and cave exploring. Should be interesting.<br />
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Watch this space.<br />
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Lyndylouhttp://www.blogger.com/profile/18133867788700520182noreply@blogger.com13tag:blogger.com,1999:blog-610184634972072534.post-82253966620160838972012-08-31T12:33:00.000+01:002012-08-31T12:38:19.514+01:00Make-A-Wish Foundation UK<div dir="ltr" style="text-align: left;" trbidi="on">
I was emailed this week by Hayley Epps from the <a href="http://www.make-a-wish.org.uk/">Make-A-Wish Foundation UK </a>.<br />
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It seemed fate that she emailed me at this time as I had just recently applied to this Charity on behalf of my son Jack.<br />
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Hayley was reaching out to Bloggers for the first time and made a special request on behalf of a family whose child, May, had a wish granted. This is their story:<br />
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<span style="color: #0070c0; font-family: 'Futura Std Book','sans-serif'; mso-fareast-language: EN-GB;">Back
in the summer of 2010 Make-A-Wish UK granted the wish of five year old May who
was fighting a rare cancer called Rhabdomyosarcoma – she wished to be a princess
for the day. Sadly May passed away just a couple of months after her wish, two
years ago today, on 31<sup>st</sup> August 2010.</span><span style="color: #0070c0; font-family: 'Futura Std Book','sans-serif';"><o:p></o:p></span></div>
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<span style="color: #0070c0; font-family: 'Futura Std Book','sans-serif'; mso-fareast-language: EN-GB;">May’s
family have been involved with Make-A-Wish ever since, raising as much money as
they can to ensure that other families going through the same awful experience
can have their wish. May’s Dad, Neil, has made this short video and would like
as many people as possible to watch it and support
Make-A-Wish:<o:p></o:p></span></div>
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<span style="font-family: 'Futura Std Book','sans-serif'; font-size: 12pt; mso-fareast-language: EN-GB;"><a href="http://www.youtube.com/watch?v=MfkiRwWgGwQ" title="http://www.youtube.com/watch?v=MfkiRwWgGwQ"><span style="color: blue;">http://www.youtube.com/watch?v=MfkiRwWgGwQ</span></a><o:p></o:p></span></div>
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<span style="color: #0070c0; font-family: 'Futura Std Book','sans-serif'; mso-fareast-language: EN-GB;">It's
only a minute or so long, so please watch the video if you have a moment to
spare. And if you could share it with as many people as you can it would mean so
much to Neil and his family. If you are able to make a donation too, to help
grant a wish to another child like May, you can ‘Remember May’ at <u><a href="http://www.justgiving.com/RememberMay" title="http://www.justgiving.com/RememberMay"><span style="color: #0070c0;">www.justgiving.com/RememberMay</span></a></u>.<u>
</u></span><span style="color: #0070c0; font-family: 'Futura Std Book','sans-serif'; mso-fareast-language: EN-GB;"><o:p></o:p></span></div>
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<span style="font-family: Futura Std Book, sans-serif;">Please pass this video on via your Blog, Facebook, Google+ or Twitter using the hashtag #RememberMay and the shortened link: </span><span style="color: blue; font-family: 'Futura Std Book', sans-serif;"><a href="http://ow.ly/dmUzN" style="font-family: 'Futura Std Book', sans-serif;" title="http://ow.ly/dmUzN">http://ow.ly/dmUzN</a>.</span></div>
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<span style="color: blue; font-family: 'Futura Std Book', sans-serif;">You can make a difference to a child like Jack who is battling a life shortening condition.</span></div>
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<span style="color: blue; font-family: 'Futura Std Book', sans-serif;">Thank you</span></div>
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Lyndylouhttp://www.blogger.com/profile/18133867788700520182noreply@blogger.com4