Sunday, 16 December 2012

OMG it's nearly Christmas!

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!

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.

Jackyboy looking such a cool dude

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.

My grown up babies

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!

Virginia, having her first High Tea

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.

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!

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.

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.

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.

Jack's Halloween costume....I turned his wheelchair into a pirate ship
with pirate Jack

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.

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.

Oops I am on the naughty list!!
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.

Hope you all have a lovely Christmas.

Wednesday, 24 October 2012

She is talking shit!

I have had a very busy few weeks but now it is the school holidays....thank god.

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.

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.

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.

The teacher insisted that I come and look at these soiled pads because in her expert 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!

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.

pic from here

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 two members of staff doing in the bathroom all that time!

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 she felt there was a problem and I obviously wasn't willing to do anything about it, in her eyes.

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.

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!!!

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!

pic from here

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!

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.

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.

This, to me, is a real, bona fide problem 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.

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.

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.

You would have been very proud of me cos I managed to get my point across and I didn't swear, not once! LOL.

pic from here

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!"

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".

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!".

I threw up my hands saying "so it's not his loose movements that are keeping him in there so long then!"

I rest my case.

Friday, 21 September 2012

It's oh so quiet....

A lot has happened in the last month.

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!

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.

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!!!

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!

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.

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.

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.

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.

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.

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.

view from her window...door on the left is her en-suite shower
view from the door

Her desk...looks like she means business!

My girlie, trying to be brave
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.

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.

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.

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.

I was able to leave Holly this time without tears and she seemed much more settled.

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.

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.

My poor boy, ill again.

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!".

Funny funny girl!

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.

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.

Pipe Band playing at the Food and Drink Festival

Next week I am taking her to Ballindalloch Castle and at some point we are also going hiking and cave exploring. Should be interesting.

Watch this space.

Friday, 31 August 2012

Make-A-Wish Foundation UK

I was emailed this week by Hayley Epps from the Make-A-Wish Foundation UK .

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.

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:

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 31st August 2010.

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:

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

Please pass this video on via your Blog, Facebook, Google+ or Twitter using the hashtag #RememberMay and the shortened link:

You can make a difference to a child like Jack who is battling a life shortening condition.

Thank you

Thursday, 30 August 2012

Could you do it, if it was asked of you?

Jack finally has his new button peg. He didn't get it done in Edinburgh after all as it turned out to be too big so they had to order another one, have it sent to the house and I put it in myself. So now 11 months on, we have come full circle.

Finally.....a cute little button peg

We, as a family, have been through so much in those 11 months. Holly and I have been separated for the first time in a crisis and that was so so hard as she is my rock and I am hers.

Jack suffered two episodes where he had over a hundred seizures in one day, had aspiration pneumonia twice, oesophagitis, gastritis, suffered endless pain, was covered in bruises after thrashing around in agony, numerous operations, endless needles and drips, was rushed to HDU 4 times and stopped breathing so many times, that I lost count. Add to that a broken leg and 3 months in plaster and it's enough to turn anyone into a raging alcoholic!

After the first episode in Edinburgh, Jack's Neurologist gently brought up the subject of filling in a CYPADM form. This is a form which the parents fill in, with the help of the child's specialist, to record their wishes should an acute deterioration happen again. I said that I would definitely think about it and they informed Rachel House (children's Hospice) that I was open to discussion but when I was there we never got around to it.

After this second episode of acute deterioration the subject was gently brought up again but this time they put the discussion into action. I was introduced to the palliative care nurse Katrina and we went somewhere private, along with Michelle (epilepsy nurse) and she very gently explained what these forms were and why it was important for me to fill them in. There were lots of tears as I tried hard to be brave but I truly felt that my heart was breaking. I didn't want to deal with this on top of everything else I had coped with but I knew that it was the right thing to do. I was given the forms to take away to look over and we would fill them in together the week after.

Jack, at one of his lowest points.....not a well boy.

I was due to go home and see Holly that day so for most of the time I was away, I refused to look at the forms but then it was time to go back to the hospital so I broached the subject of them with Holly and I explained what they were for. We cried lots of tears but together we made decisions on what we would want for Jack if we were faced with this again.

The day after I got back, Granny Mac and I had nipped up town along with Jack's key worker, Helen, from Rachel House. She was there to give me some support and as it was a sunny day, we took off for an hour. We hadn't gone far when I got a phone call from the ward saying that the Neurologist wanted to meet with me at 2.30pm re this first form so we took a taxi back to the hospital. I felt sick. Granny Mac and Helen went to a nearby café while I went back to the ward. I sat there for an hour before they came and by then I could feel myself shaking and I couldn't get warm.

The CYPADM form has only two sides to it so you would think that it wouldn't take long to fill in but it did. Both Ailsa (neurologist) and Celia (epilepsy nurse) gently explained what this form meant, that it was a record of my wishes at this time but could be changed in the future and that it would be sent to all the health authorities involved in Jack's care, Rachel House, respite and Jack had to have this form with him at all times.

They went over what full resuscitation meant, at my request, so that I was sure that I knew what was involved and then I had to tick the intervention that I wanted medical staff to take and anything else was scored out. I also had to decide what to do if we were in an ambulance and he was unlikely to survive the journey. Did I want to take him home or go to the hospital? If he was in hospital and there was nothing more they could do, did I want to take him home or go to Rachel House if it were nearer?

There were tears but not many cos I was holding myself together by sheer will and when I finally walked out of there, I was drained.

I headed back to meet Granny Mac and Helen. When I arrived Granny Mac was distraught as I had been away over two hours. She kept saying that she should have been with me but I had wanted to do this alone because I couldn't take her feelings into consideration in this. I had to do what was right for Jack.

A few days later, Katrina (palliative care nurse) and Celia (epilepsy nurse) came to get me to fill in the final form. This form was a hell of a lot harder to deal with. You had to say what would happen if Jack was at home and the end was close. Who you wanted there, who you nominated to let everyone know what was happening, which funeral company you wanted to use right down to what went in the coffin with him. As hard as the form was, it also focused on the kind of life I wanted for Jack whilst he was still with us and how we could achieve it. Again there were tears and at times I struggled to speak but we got there in the end.

I left that room wanting to be anywhere else but in that hospital so I grabbed Granny Mac and left. We headed out for lunch but to be honest, the last thing I wanted was to eat but I went through the motions cos that's what you do. Afterwards, heading back to the hospital, I told granny Mac I wasn't going back, that I needed to get away. I didn't know where I was going, I was just going to walk.

I just couldn't go back into that ward and play with Jack after what I had just done, it didn't seem right. He would have known that I was distraught and I didn't want him to see me like that. It also felt wrong somehow to be making these decisions at a time when he was so well!

Jack, well and looking good
I cried all the way into Edinburgh city centre but I felt a little calmer after I had walked a while.

I wandered aimlessly for a few hours and was accosted by a young charity collector for Unicef. I told him that I seriously didn't have any money cos it was costing me a fortune to stay at the hospital, that I already supported Unicef and tried to get away. He must have sensed how distraught I was cos he opened his arms and said "Do you want a hug?". I just stood and looked at him, then walked into his arms. It was the most surreal moment I have had in a long time. He held me for what seemed like ages, then he stepped back, wished me luck and let me go.

I will never forget the kindness of that man. I felt a little better after and then I walked some more. I ended up in the Chocolate Lounge at Harvey Nichols department store, where I had the biggest piece of carrot cake I had seen in a while and a huge mug of hot chocolate. Comfort food if ever there was such a thing.

Pic from here along with recipe

I arrived back in the ward around 6.30pm after being awol for over 6 hours to be met by a worried and slightly frantic Granny Mac.

The next day, I met Celia in the corridor and she said "I think we broke you yesterday". I just nodded cos that was the understatement of the bloody year!

That was February. In July, we had a visit from the chaplain from Rachel House. Those of you who know me well, will know that I am more spiritual than religious. I get on brilliantly with this chaplain because he doesn't preach to me, he accepts me for who I am.

We discussed these forms that I had filled in and I broke down again while telling him what mine and Holly's wishes were for Jack and you know what he said?

He said that in order to make those decisions you have to love someone unconditionally and that means putting your own feelings aside and thinking of only them. It made me feel slightly better.

Whatever it is, it was one of the hardest things I have ever had to do.

Wednesday, 8 August 2012

Ten months on....

The summer has passed in a blur and Olympic fever has definitely gripped the nation.

I am loving the games and I hadn't realised just how competitive I was until I found myself screaming at the TV urging our athletes on. I have made Jack jump quite a few times when yelling without warning!

Poor Jack has to put up with both Holly and I jumping up and down shouting "C'MON!" at the top of our lungs. He is in respite tonight and I am sure he is glad of the peace and quiet.

Jack is doing well but he sleeps a lot, sometimes up to 15 hours a day! His seizures haven't been too bad either so I can only assume that it is a combination of being a teenager and being so active all of a sudden. It does worry me though but there is no point getting him up out of bed, just for him to sleep in his wheelchair which is giving him zero support at the moment.

Totally zonked!

His scoliosis is really obvious now and his ribs are sitting on his hip so he is slumped over to the left. I am trying everything to prop him up in the chair but nothing seems to work. I have an appointment with wheelchair services on the 16th August in the hope they can put in an insert of sorts into his chair to "prop him up" failing that they will have to order a new one and that can take up to a year to come!

I learned in February, while at Edinburgh Sick Kids that his scoliosis can't be fixed. It is so very severe but thankfully it is the lower part of his spine that is twisted and therefore it is not pushing against his lungs. Small comfort let me tell you. They could operate but they would only be able to improve his spine by 60%.

You can see how little support his chair is giving him

They are not willing to take the chance though because a) he has a VNS fitted which means they can't use Diathermy (for treatment of healing and pain) during surgery and if they did, it would "fry" his vagus nerve and b) after his two episodes of aspiration pneumonia only weeks apart it was felt that even without the VNS his breathing would become compromised during the long hours (10 at least) of surgery.

I was absolutely distraught so much so that the nurse offered to take Jack back to the ward to give me time to take it all in. I couldn't stop crying and Granny Mac was equally upset.

The surgeon told me that once he was 18 and had stopped growing, he would need a really good moulded wheelchair. He also said that Jack's spine would become fixed and his ribs would permanently sit on his hip and that he would require pain relief.

you see what I mean?

The good news was that his spine was already at that point so it had nowhere else to go so wouldn't actually get any worse! This was little comfort but once I calmed down I realised that I was breathing a sigh of relief. The decision about his back had been taken out of my hands so I never had to sit through 10 hours plus of surgery wondering if he was going to pull through or not. Holly was equally relieved when I told her but upset at the same time. We are so alike.

This news came at the end of the 4 months Jack had spent in hospital and it was a cruel blow. Since then there have been lots more dramas, mostly to do with a broken leg and with his feeding tube falling apart, cancelled operations, then having the operation and getting home.

When we arrived at the hospital the 2nd time for Jack's fundoplication, it all looked good and I was hopeful that the stress of the last few months would soon be over but the next day, the operation was cancelled again! I couldn't believe it. They suggested we go home and come back a few days later but with tears  streaming down my face I stood my ground and refused to go home as his feeding tube was constantly falling apart.

The irony was that I had fixed it the day before we went to hospital and it was still looking semi decent. Granny Mac and I went for a coffee and whilst there I told her that the only way to make this operation happen was to "unfix it". I could not go home worrying that the only means of getting any kind of nutrition into him could pack up at any moment. It was too much after everything else I had dealt with.

That was the on the Wednesday. By Sunday his tube had come so far out of his body and was held together by sticky tape.I knew that it couldn't possibly be in the right place now and then it started leaking feed that afternoon, totally packing up in the early hours of Monday morning.

This is how bad it was the day before the op

Jack had his op that day and spent the night in intensive care. The surgeon told me that I had been correct and the tube was no longer in his stomach instead it had become enbedded in his stomach wall and had to be cut out. It still wasn't a button peg but we were a step closer.

comfortable after his operation

We got home 8 days later at 5pm, in time for the carer coming in. Marion was delighted to see us and I was glad of a small breather after driving for 4 hours.

Three hours later, Marion and I were putting Jack's meds through his tube when it became blocked. We tried everything to budge it, to no avail.

I called Edinburgh in a total panic, they told me what to do, then told me to call back. I did everything the nurse said and more but no it wasn't budging. Holly called Granny Mac and we spent a further 20 mins trying to unblock it with me lurching between tears and total calm. Eventually we took him up to the local Children's ward where they spent until 3am trying to unblock it. Meanwhile Jack, who thankfully slept through it all, was  stuck with needles everywhere as they desperately tried to find a vein to support fluids.

I was totally inconsolable as they said we would have to go back to Edinburgh or back to Aberdeen. Had we not had enough? Could I not spend an evening at home without some major drama unfolding? Why couldn't anything just be straightforward?

Thankfully Marion, Granny Mac and Lynette the overnight carer were very supportive, as were the nurses. Marion made me endless cups of tea which she was allowed to take into the treatment room which is unheard of....that's how distraught I was!

I fell into bed at 3am once they got Jack into bed. I was worn out.

The next day, a lovely doctor tried as well to unblock the peg with no luck. He said that he should be able to just take this one out and put a new one in but I suggested he check with the surgeon in Edinburgh first.

By 2pm, he had all the information he needed and he took the blocked peg out and fitted a new one. Turned out that the calcium they had prescribed to help his leg heal (which was still in bloody plaster 3 months on!) had hardened in the tube and that was why we couldn't fix it. I had to be so so careful from now on, giving it to him separately so it didn't attach to the other meds. STRESS!!!

We went home and all was well for a few days but then the tube wasn't making a firm enough connection to the feed pump so I had to tape it on every time Jack was fed. Then the lid of the opening started to fall apart and my stress levels were high once more! Luckily Alba (respite) came to my rescue and they found an attachment which hasn't moved since. I could have kissed them!

Tomorrow, 10 months after all the drama started, Jack will finally have come full circle when we get a button peg put back in. You have no idea how happy this makes me. I wont believe it though, til it is in situ!

From there we will go to Rachel House Children's Hospice for us all to have some well earned TLC.  I am sooooooo looking forward to that.

Saturday, 28 July 2012

I could have been an Olympic athlete....honest!

The Olympics has started and people all over the world will be glued to their screens for the next few weeks.

When I was in my teens, my family were heavily into athletics and all my brothers and sisters, bar one were members of the Elgin Athletics Club.

My brothers Stephen and Michael were the fastest but my sisters and I held our own. I could never beat my brother Michael as he was such a speed demon, so much so that he has won medals galore and he has run all over the world while he was in the RAF breaking a few records on his way.

One of his cool trophies

He broke the record!

We used to train around Elgin Academy, which was perched on a hill and the back exit from the school was the quickest way home but it was very very dark and quite scary.

One night, after training, Michael and I were making our way down the hill in the pitch black when suddenly this loud booming voice shouted from behind us "YOU BOY!". We stopped chatting, turned and looked around us but could see nothing so we carried on chatting and walking down the hill. Seconds later, the voice shouted at us again, this time, it felt like it was right behind us, making the hairs on the back of my neck stand up.

We stopped again and looked around. As my eyes travelled over the school's perimeter fence, I saw a huge bulky shadow moving along it and my heart nearly stopped. Not even stopping to think, I took off in a sprint, running for my life!  I wasn't aware of anything but my heart trying to burst outta my chest and the wind whipping my hair around my face.

Pic from here

Michael hadn't even noticed I had gone and by the time he did, I was over the little bridge and sprinting like a demon past the football ground. He took off after me at great speed, yelling my name but I was oblivious! Finally I heard him yelling at me as I reached the swimming pool so I slowed down and when I turned around, he was clutching his sides, panting and totally out of breath.

My heart was still pounding with pure terror but then I started laughing hysterically about the fact that I had taken off as if the devil himself was after me and I wasn't even that out of breath whereas my brother, the faster of us both, hadn't been able to catch me and was bent double and breathless. Then he was laughing as he told me he's seen the same shadow as I had but he had turned to me, to ask if I had seen the same thing only to see this tiny speck sprinting away into the distance.

He couldn't believe how far and how fast I had run. It was the one and only time I ever raced him and won.

He was telling this story to Holly when he was visiting from Berlin earlier this year. He told her that "your mum ran so fast that night that even Usain Bolt wouldn't have been able to catch her and he's the fastest man in the world!" I roared with laughter at that comment but I think it could have been true.

yes I was this fast!

At school, I was always in the relay, 60m and 100m sprint, long jump, hurdles, 200m and the 3000m and cross country running. I wasn't the fastest girl in the school but I nearly always came away with a silver certificate at the end of sports day.

I was heavily into gymnastics too and Nadi Comaneci was my hero at the time. I had dreams of being an Olympic gymnast but sadly it was not to be.

One morning, I woke up with two appendages on the front of my chest and was appalled to discover that the boobs I had so longed for were gonna seriously get in the way of my athletic career. I mean, have you ever seen a gymnast with a decent set of boobs? No? Me either.

My running became more of a problem because back then a "sports bra" was unheard of in my world. Any kind of running, even just running up the path would be painful and one time, my sister's boyfriend actually asked me if I'd blacked my eye! I was totally mortified.

Pic from here

I knew my athletic career was over when I had to run the 100m hurdles and all the boys came to watch as I ran and my boobs jiggled up and down! My cheeks were red when I got to the end and not with exertion!

I remember going home, crying saying to my mum that "these boobs were a curse" and she replied " no Lynne they are an asset." I remember turning on her and growling "that an asset was something you could buy and sell and since the only way to sell these was to become a prostitute, it was hardly likely that it was something I was gonna do!" She was bent double with laughter when I then added "I could always become a Page 3 model I suppose." And for a while, I seriously thought that was the way to go!

Eventually I started saving up to have them reduced but that soon fell to the way side when I learned to cope with the attention they brought and when I became old enough to drink, my boobs became very useful in attracting the attention of the barman and jumping the queue!

I knew there had to be a perk.

Wednesday, 11 July 2012

The perils of dating internet it and weep!

Since I wrote about the end of my relationship with my Friend with Perks I have once again braved the world of internet dating.

If you are easily offended then in advance I apologise but I am afraid I really must tell it like it is!

Since joining one particular site, I have had lots of emails from men. All have been complimentary, some have been sleazy and some have been just plain weird!

I am pretty open minded but even I find myself thinking WTF?

I seem to attract all age groups, in particular the really young guys who I think have a fantasy about being with an older woman. That really isn't my thing and it is made even more obvious by the fact that they have nothing of interest to say to me apart from talking about their gaming activities on their xbox/playstation etc and how plastered they were that weekend! Whilst the idea of a younger guy appeals slightly, the thought of having to teach them what to do, really doesn't float my boat! It just brings to mind an image of a guy fumbling in the dark with me calling directions such as left a bit, right a bit, up higher, yes just there....NO not there!!! LOL You get the picture!

pic from here

Then there are the older guys who are way older than me who put in their profiles that they "like cuddles". I immediately start laughing at that cos I have this image in my head of them being so old and frail that I have to physically hold them up and I can't help but go into fits of giggles. Now for those older guys that happen to be reading this....I apologise for assuming such a thing but really it would be like dating my dad, who ironically happens to be one of the fittest guys I know. Still it's definitely a no go area for me.

That leaves us with the guys in between. The ones I have been chatting to or email fall into two categories. The really nice ones who are polite but who I know by looking at their photo that I will not be attracted to yet I still chat to them cos after all, looks are only skin deep. They are interested in me and ask pertinent questions but so far have not piqued my interest which is a shame.

One guy who was like that, asked me to meet up with him for coffee so we arranged to meet the following week. That whole week he kept giving me a blow by blow account of what he was doing, letting me know how busy he was and then lo and behold, the day before we were due to meet, he cancelled. He gave no reason and when I said it was "ok, you obviously had a better offer" he then proceeded to bombard me with texts saying how much he wanted to meet me.

After a whole evening of this, I got fed up and told him to stop texting me so he panicked and said he now could meet me after all. I told him that "no, you had your chance so could you please stop texting me". The next day, at exactly the time we were supposed to have met up, I received some very abusive texts from him saying that "god help any guy that takes you on! It's women like you who give other women a bad name!"
WTF!!! Just because I am not willing to put up with crap from someone I barely know, that makes me a bitch?

pic from here

I couldn't help it, but I sent him a text full of HA HA HA'S with the message that "if you have time to send me abusive texts then you had the time to meet up with me so could you just go and crawl back under the rock from which you came!". He tried phoning me then but I didn't answer. He is now blocked on the dating site and his number in my phone is listed as DO NOT ANSWER THIS NUMBER! I daren't delete it in case he tries to call and as I often get calls from doctors on my mobile with unknown numbers I can't take the risk of just not answering it!

Another guy I was chatting to, kept asking me had I seen anyone yet who I liked and when I told him no, he got a bit snotty with me. When I explained that he was too far away (his profile said he lived in London) he got really annoyed as he actually only lived an hour away from me. When I explained he was a bit happier but then I kept having to reassure him that yes I thought he was cute, yes I would have picked him to talk to if his profile had said he lived closer, etc etc. Geez and they say women are insecure! Naturally that email relationship didn't last as he was already sucking my will to live and I hadn't even met the bloody guy!

pic from here

Then there is the other category. The ones I do find attractive but who are only after the one thing, I wouldn't mind so much if they were willing to take you out on a date and at least make a pretence of getting to know you but no, these guys just want you to put out after a cup of coffee no less and they will even skip that if you were willing!

A few weeks ago, an email from one particular guy, absolutely made my day cos he came right out and asked me if I fancied having his young, hard, hot body rubbed up against mine. I laughed so hard I nearly cried. Lets face it, it's not every day you get an offer like that and it made my day. This guy was 32 so I replied, telling him how much it had made me laugh.. That's when he came back and said that he wasn't interested in having even so much as a conversation, he just wanted to meet me somewhere, fuck, then leave.

I was like "what no foreplay? You're not even gonna ask me do I like this or that?" As honest as this admission was I just couldn't face the prospect!.

Then you have the guys who have written on their profile that they are looking for a relationship but really they are not. Again they just want sex or a fuck buddy but without the buddy bit. Same same no matter which way you look at it.

ha ha ha pic from here

And this is the part that rankles the most. Are they just too lazy to bother? Have they spent too much time and effort meeting the wrong women and getting disappointed. Or is it just easier to have a relationship via text and email, meet up for sex and pretend that this is normal. Has all this technology we have in the 21st century enabled us to just say what the hell you want, without a filter cos it's not like they can see you!

Put it this way, would you actually ask a girl you just met in a bar if her va jay jay was shaven or not? Would you ask her what her favourite position is and what's the kinkiest thing she has ever done? If any men reading this say no, then seriously, tell me this, why is it ok to ask me on the internet?

How would you feel if I asked for the dimension of your penis then told you that "mmmm actually size really does matter!!!" If you walked right up to me in a bar and asked me any of these things, I would slap you! I  had a guy quite a few years back, cup my breast whilst I was talking to his mate in a bar. He obviously thought it was his god given right so he was completely taken aback when I knocked his hand away, sending his drink spinning up in the air and leaving everyone gawping and me snarling like a rabid terrior telling him exactly what I thought of him!

Maybe I should start a internet site, a bit like the take away sites popping up all over where these guys could order a side of rump, heavy on the boobies, hold the pubes blah blah blah. Oh wait they don't want to pay for it.....damn....another cool idea down the tubes! LOL

Tee hee hee

Don't get me wrong, I am no prude. In fact I am one of the most open minded people I know.I am happy to talk about anything, even sex, but if that's all you have to talk about then I will quickly get bored.It's not that I am picking the wrong guys because every one of these guys I have spoken to have contacted me! I don't do the contacting because essentially I am quite shy approaching guys in person and that hasn't changed being on the internet.

I have had guys email me and start a conversation and when I reply, there is silence. I have spent an evening chatting to a guy who was so interesting, a good laugh, lots of banter and then we sent each other a couple of emails for a day and that was it. No more contact! Was I just someone he wanted to practise his flirting on?Did he fancy me that night but in the cold light of day without the aid of a few beers, decided he didn't? I will never know cos these guys just stop chatting and don't reply when you say hi. Confused? Hell yeah and they say women are complex! We've got nothing on these guys!

I know so many women who have just decided that they would rather be single cos they have been so confused by these mixed messages that guys are sending out. They have chosen to get much more intimate with their Rampant Rabbits cos a) it gives them exactly what they want b) they don't have to worry that it wont call c) it doesn't need to be reassured that it's good in bed and finally it's not gonna give her a rude awakening in the morning by digging into her back!
a rampant rabbit :)

To me it's simple, if you are on a dating site, it's because you want to date! If you don't want that then piss off to one of those Intimate Encounter sites, there are hundreds on the web, I know cos I checked when I was writing this and leave the rest of us to get on with trying to meet up with someone decent.

I have been told by people I know that "You don't really need a bloke!" This is usually from someone who is smugly married, living with someone or who is in a relationship of sorts. Yes they are correct, I don't actually need a guy but I want someone to hold me in my darkest hours, laugh with me when I am helpless with laughter and who gives the best cuddles. In return they will get all they wanted including sex on tap but first you have to work a bit harder than asking me when I am gonna put out!!!

Is that too much to ask???


Saturday, 7 July 2012

Back to normal

I can't believe it has been a month since I last posted. So much has happened but I will save the telling of that for another day.

Suffice to say, Jack is doing well. He had his operation, his cast is off and he is now free to roam around the floor with me in hot pursuit.

Trying to change his nappy is like trying to hold down an octopus! He has gotten so tall and so strong all of a sudden that he fights me when I try to do anything that gets in the way of his exploration of my living room floor.

The other day, I was sitting on the floor in mid nappy change when he decided he was bored, rolled over practically crushing my leg and I couldn't get him to lie back down. I started shouting to Holly for help and was yelling "he's got my leg!". She came in, laughed and said "he's not a shark ya know, he's not gonna bite it off!"

That set me off into a fit of giggles and the two of us were helpless with laughter . It took two of us to hold him in place while I sorted him out. Thank god it was just a wet one or it could have gotten messy. Afterwards I felt like I had been wrestling with an Alligator...tee hee hee. Who needs the gym when you have a child like Jackyboy.

Doesn't he look so grown up all of a sudden?
I had started to relax a little after removing the large unit from the living room after he got his leg caught under it and was feeling pretty smart that I had removed all dangers. Huh! NOT SO! Granny Mac reliably informed me one day after looking after him, that she had to rescue his arm from under the sofa. AAAAHHH!  I can see me emptying the living room of all furniture at this rate and all that would be in the room would be bean bags for us to sit on. Jack would just love that, more freedom to roam. 

It is now the school holidays and they are off for 7 weeks. Eeek! I think I will have to turn to wine to get me through! Lol. Luckily I have a trip to Rachel House in August so I am looking forward to being spoilt and spending some quality time with my girlie.

My two dogs are so so happy to have me home again. Shiloh (the blonde one) has been practically trying to crawl onto my lap, every opportunity she gets. I just can't pet her enough. She has always been demanding but now she is worse than ever. When the carers who come in at night make a fuss of her, she sits there lapping it up and then she turns and give me such a look as if to say "this is how I am meant to be treated". It is hilarious to watch and usually sends me into fits of laughter. I am sure she is the dog version of Holly!

Loki and Shiloh sitting pretty
Next weekend it is my birthday and for the first time ever, Holly can come out with me to the pub. I am so excited about that! She suggested going to see Magic Mike at the cinema first so that I can be treated to half naked men before we get dolled up to go out. Oooh err! I have taught her well me thinks.

Hope all is well in your world.

Sunday, 3 June 2012

It's June already but it's freezing....

I can't quite believe it is now June. Where has the time gone? And it is so cold still or is it just me?

The days for me seem to fall into each other and then I look up and another week has flown by.

Holly has been up to her eyes in studying for her exams. So far the first two have gone ok and she is quietly confident. I have had to help her keep on track and finally she finished her Art Portfolio which is quite stunning. We took it into school last Tuesday and this was the first time her teachers had seen her stuff and they were very impressed. Some of it is 3D so they are not sure if they are going to be able to send it all off or just take photos.

I suggested that they do both cos you truly can't appreciate the 3D stuff without seeing it. Here's hoping that they do. Once she gets it all back, I will take pics for you to see.

She has one other exam left to do and that is Psychology. On the same day, she starts acting with The Out of Darkness Theatre company doing The Shop. She acted in this play 2 years ago and that was the subject of  my 3rd post on this blog.

While all that is happening, Jack and I, will hopefully be in Edinburgh Sick Kids with Jack recovering from his operation. I have to phone on Monday to check that they have an intensive care bed. If they do and Jack is well, then we head down on Tuesday 5th June and the operation should take place sometime on the 6th.

I have my fingers, toes, legs etc crossed cos seriously I cannot take much more of this bloody tube hanging from his stomach. How he hasn't yanked it out yet, is beyond me cos boy has he tried...hard! He kneels on it, pulls it, it gets caught on things and the damn thing has fallen apart more times than I care to mention that I could SCREAM! If he pulls it out too far, then it will end up back in his stomach and we will be back where we started with him aspirating all the time which is really bad!

So this operation just has to happen next week otherwise I think I am gonna pull my hair out...and really that wouldn't be pretty!

Jack is still in plaster but it has been cut down to just below the knee so he is able to move around quite freely again. He is over the moon and so much happier but it now means the wee monkey can get into so much more mischief and the dogs are no longer safe...tee hee hee.

Jack getting ready to pounce on Loki

Poor Loki, our baby pup was trying to snuggle up to him but he had other ideas and eventually she got away after he was trying to play with her paws, nose and ears.

Last weekend was such a scorcher of a day that we went out for a two mile hike with Granny Mac and the two dogs. Jack looked so cool that people were smiling as we were walking along. What do you think?

Cool dude!
such a cutie

The school prize giving was last Monday too and Jack got a prize. They told me it was for "fighting through adversity and coming back with a smile". Holly didn't get a prize this year but 5 years out of 6 is pretty damn good don't you think? Plus she got to take her brother up on stage, along with Diz, to get his certificate.

Jack's certificate from the prize giving

I was so tearful seeing my two fantastic children up on that stage together. I was bursting with pride. Holly was not disappointed though because she got not 1 but 2 mentions in the Headmaster's speech. She was seriously chuffed about that.

I have been lost under a mountain of paperwork this week. Why is it that it all comes in at the same time? I am finally seeing the the end of it but my passport has gone awol and I was hoping to use it to renew my driving licence photo but alas it's not to be so on Monday I will head out to get new passport size photos. What's the betting that the bloody passport will materialise the minute I do that?

I had a bit of a meltdown this week. Jack was in respite and they called me cos his peg had come apart again so I had to go up and fix it. I was doing ok until they asked me how I was and then the tears came. I was just so bloody exhausted to be honest and once the flood gates opened there was no stopping those tears. That's what happens when you keep it all in!

They were so good with me though and were keen to get me some emergency respite but I refused because it's not that I wasn't coping it's just that I never get time to grieve for all the losses of the last year so every now and then, it all overflows and I end up a gibbering, blubbering mess.

Not a pretty sight, I assure you!

Hoping for a better week though. Onwards and upwards.

Sunday, 13 May 2012

The wedding

Finally I have managed to upload the photos of my friends Emma and Mark's wedding in April.  The weather in Elgin that week had been horrendous with, at times, four seasons in one day!  In fact while Holly and I were inside the camper van the night before, decorating, there was a storm of hailstones bouncing off the roof. Not good for a beach wedding!

But the next day, although it was cold, there were beautiful blue skies to be seen so I was hopeful that at least we would escape the snow.

If you are wondering why their wedding car is a camper van....then I am afraid, I am to blame as it was my idea. Mark came and asked for ideas and this is what I came up with. I thought it was cool, we just had to wait and see if Emma agreed, which she did, much to Mark's delight. Throw in my dad who owns said jalopy, in his best finery and it was a very impressive wedding car indeed.

Holly and I spent a hilarious hour decorating it especially as it was in the twilight hour before it got dark and I had forgotten to ask my dad how to put the lights on! I tired starting the car but only the lights above the driver came on, nothing else! I was frightened to touch anything else in case I drained the battery so we just fumbled around in the dark! LOL
The wedding car (with my mum's name in the number plate)
The back view
The chauffeur (my dad) with a small tipple for the happy couple

Mark getting the wedding site ready and showing me the carpet to get Jack onto the beach

When we arrived at Cullen Harbour, Mark was there preparing the site for the ceremony. He asked Holly to write his and Emma's name in the sand next to a beach towel and sunscreen. Very authentic. Then he showed me how he was going to get Jack onto the beach, using an old piece of sand coloured carpet to give the wheels some traction. When I suggested that we just watch the ceremony from the entrance to the beach, he was appalled and told me in no uncertain terms that Jack was to be included and we would get him on the beach, end of story as that's what Emma and Mark wanted. They had thought of everything and I want them to know just how much it meant to us that they went that extra mile.

There followed an absolutely hilarious 10 mins getting Jack onto the sand with the help of quite a few guests but once we were in position the rest of the guests joined us.

Mark walking Emma down to the beach

The ceremony with their names in the sand
The ceremony was beautiful. They had written their own vows and it was lovely to see them getting married at the place where Mark had actually proposed. I was quite tearful. That's saying something let me tell you as usually when I pass a wedding, I have the urge to shout out the window "don't do it!!!!" Tee hee hee

Lily the adorable flower girl and her mum Janice
Jack, chilled out dude

Back view of Emma's dress...stunning!

The chauffeur and the bride

A lovely pic of Janice, Lily, Mark, Emma and Eilidh (Emma's daughter)

Having a laugh at something I said...could it be Fakebake? lol

Jack coping a feel of Emma....I blame the hormones!
Mmmm what have we here? another young man Emma!

Maureen (in the middle) and Jess (on the right)

It may have looked gorgeous but this is how cold it actually was!

The bride and groom with the male guests in their finery

Emma, Janice and Lily....looking beautiful
And ice cream....they thought of everything!

Eilidh and Sophie hiding from the cold in the wedding car
The wedding decorations inside, we didn't make too bad a job in the dark!
Cute balloon
Arriving at the hotel

Confetti time

The kiss 
The wedding reception was lovely. The food was gorgeous and the view out of the window was stunning. I had a great time celebrating the love between two of my most deserving friends. It is obvious to anyone who sees them how much they love each other.
Cupcakes instead of wedding cake....I like 

Mark's love of tractors is included in the wedding


Lovely little touches

Wedding trivia
Doris, looking glam
The view from the hotel

Cutting the cupcake
As we were leaving the reception, I came across this car. Isn't is lovely? The man driving it was just about to cover it up for the night when we appeared. It is the Help for Heroes car which is going around the coast of Britain, raising funds. I offered him a donation in return for Emma and Mark getting their picture taken. He was happy to oblige. What a cool idea to raise money. He has a blog which is very interesting and features all the adventures in his travels. Emma and Mark feature in it too.

With the Help for Heroes car which is going around the coast of Britain
That is my car in the background. Holly and Jack are hiding behind it so that they aren't in the photo!!!

And lastly, the thank you card which I thought was so lovely.

Another nice touch.

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