Your chariot awaits....

A couple of weeks after Jack passed away, Holly had her graduation ceremony in Edinburgh.

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.

So Holly asked her Auntie Jacqui and my friend Kathy to come to the ceremony instead.

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.

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.

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!

They both looked at me aghast. You should have seen their faces!

As the realisation began to sink in,  I laid out our options.

Option one 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.

Option two was to just bring our own wheelchair for one of us to sit in!

There was complete silence while we all thought about it and Kathy suggested that the easiest option was to just phone them.

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.

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.

None of us wanted to go through that trauma if we could avoid it.

So that left us with only one option!

The next question out of both their mouths was " yes but where are we going to get a wheelchair from?"

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.

That made us all laugh as obviously I had really really thought it through!

Problem solving is my thing you know.

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 not to be me.

OH MY GOD you should have seen Kathy's face...absolutely priceless!

She kept saying "really? it has to be me???" Which made me double over in hysterics.

She pays a high price being my friend!!!

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.

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.

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.

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.

It was only later that we discovered that one of the front wheels was buckled!

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.

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.

So inappropriate I know.

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.

We stopped for a rest there as we'd left early to make sure we had plenty of time.

Kathy and Holly in the gardens

Kathy's seat, complete with Holly's walking stick

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.

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.

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.

Once out of the gardens it was another ten minute walk to where we needed to be, the Usher Hall.

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".

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!"

Kathy in her chariot!

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!

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.

That says a lot about the antics of Kathy and I doesn't it???

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!

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.

I think we did her proud.

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.

Holly joined us after a short while and we had our photos taken with her in her graduation get up.

lol

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!

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!

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.

So she walked back to talk to her.

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.

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.

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.

Holly introduced us to her lecturer and we crossed to the island in the middle of the road.

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.

Cue Kathy who wailed "I'm moving" and began to cling onto the chair for dear life.

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.

After a couple more attempts, with the help of Holly we made it just as cars were about to run us down.

I was still laughing, hysterically I think by this time!

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!

She leapt up so fast that she nearly fell out much to the shock of Holly's Uni Lecturer who tried to help her.

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!!!

OH MY GOD....I just wanted the ground to open up and swallow us.

As you can imagine, the Uni lecturer made a quick getaway!!!!!

I swear she must have thought we had gone mad.  And you know what, at that point, so did I!

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!!!

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.

You have no idea of the relief I felt when finally I was able to shove it into the boot of the car.

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.

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.

It's all about me me me....and if not....then why not?

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.

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.

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.

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.

The two loves of my life...

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.

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.

Let's be clear, Jack didn't know him. He chose not to know his son but he always blamed me for that.
Narcissists never take the blame for anything, they are always the victims.

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.

We took these powers seriously and we only ever wanted the best for Jack.

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.

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.

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.

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!

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.

His bitterness makes him even more ugly than he already is.

Holly and I regret nothing.

So much face rain

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.

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.

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.

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.

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.

Loki lying in down on the space where Jack's bed had been

So much of what is happening, I have no control over.

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.

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.

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.

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.

I chose to be his parent and he chose not to be.

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.

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.

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!

Benefits at this point wont cover it so I need to do something else.

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.

People keep saying to me: take your time, do this and that when you are ready.

Ready, I am a world removed from but needs must and I can't afford to be precious.

"Do you not know that a man is not dead while his name is still spoken"
                                              Terry prachett

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.

No, instead, he is far too interested in punishing me for being the parent he couldn't be, putting Jack's needs before his.

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. 

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.

The only way is up..........

Partings are such sweet sorrow

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.

We are trying so hard to be strong right now but the tears are endless and the void he has left behind is huge.

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.

It was a complete and utter privilege to be his mum and I have so many memories of him to cherish.

The Sound of Silence

I have always been a sociable person, loved lots of noise, music, people coming and going but lately, not so much.

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.

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!

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.

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.

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.

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.

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!

This is a good thing in my opinion but oh my, what a shock to the system that has been.

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!

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.

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.

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.

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!

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.

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.

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.

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.

We are all in this together after all so it is vital that all the services work together to achieve the best result.

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"!!!

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!

I'm going down, I'm yelling timber!

Life in the McKenzie house is, as usual, a cocktail of everything, on the rocks, with a twist of lime!

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.

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.

There were lots of tears but now that she has gotten her head around it, she just wants it to happen....NOW!

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.

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!!!

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.

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 way too long to go into just now.

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.

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!

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!

I was totally stunned and it's not because it's him. 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!!!

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!

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.

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!

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.

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!

Hello....

It's been a very long time since I have written in this blog.

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!

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.

Looking after one child who is unable to walk is tough but looking after two, well that's a whole new level of stress.

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.

I have watched one child lose the ability to walk, I don't want to watch another go through the same!!!

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.

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.

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.

In the meantime, I am trying to keep my head above water and keep busy busy busy.

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.

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!!!

The Food Ninja....picture of innocence!

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!!!

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!

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.

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.

He is slowly bouncing back but I am not sure that I am!

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.

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.

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.

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.

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!!!

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.

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!

Best seat in the car!!! 

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!



 

Where Did 2014 Go????

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!

In my defence, I have been struggling.

I haven't been able to pick myself up since last Christmas when Jack was in hospital and ended up on CPAP. 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.

Add to that, Holly's illness and it has been hard at times to keep a smile on my face. But I do!

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!!

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!

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.

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.

BUT.....on the plus side, despite all that, 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.

Holly and Jack having a moment

With my girlie at the zoo on a  Rachel House day out

and with my boy

 

Jack showing just how much balance he has...check out the muscles!

 
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!!!

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.

We have also set the ball in motion re Guardianship 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.

In October I applied to get on a course as an assessor for Scottish Vocational Qualifications 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!

My pumpkin for Halloween

It was so much fun. I even wore a dress... gasp shock horror! The presenter of the ceremony was Kaye Adams 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!

My red shoes!

Kaye Adams bowing to the shoes!!!

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.

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!

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?

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.

Christmas mugs...you just gotta have them

Holly helping Jack to open his presents

Sporting his Batman onesie...a christmas present from his Aunti Kathleen

Pirates of the Caribbean spoke guards to pimp his wheelchair

Personalised Wheelchair number plate.....what a cool dude!

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.

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.

Hello? Anybody out there.

It has been MONTHS since I last blogged!

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.

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.

Jack's new wheels

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.

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.

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 "well, you do have hyper mobility!".  Aaaaaaahhhhh!!!

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!

There are times I wonder.....what bloody next???

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.

Holly and Georgia outside their flat

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 long day believe me!

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.

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".
Aww, geeze, really???

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.

A girl has to get her kicks somehow!

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.

Jack and I on the bike

 

Jack's birthday with my mad friend Kathy dressed like a pirate

The pirate ship cake I made

The Gypsy Caravan

Inside the caravan

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.

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.

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?

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 will 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.

Only the plus side, it's nice to see a friendly face on those days too.

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!

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"!

Koda just after his operation
 

Cuddling up to Loki

So cute

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

No rest for the wicked they say...............yep that's me, a total badass!!!


You only get what you can cope with..........what a crock of shit!

Since my last post, my life got a little crazier, surprisingly...NOT!

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.

The first night, I was called by the hospice staff as he wasn't breathing very well.

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!

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.

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.

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.

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.

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.

This photo says it all

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!

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.

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.

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.

Trying on my new hat....he was not amused! He reminded me of the Grinch! So cute

We had a meeting shortly after. Plan B was CPAP 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.

That's the way with Jack, he knows when he needs something, so he doesn't fight it.

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!

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!

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.

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.

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.

Christmas was hectic. The house looked like a winter wonderland by the time Holly, Tori and I were finished!

Jack seems to like the tree

Even the dogs were decorated!

Tori decorating Jack's hoist

Holly with her favourite girls

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.

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.

He was just too tired and wanted to be left alone

Holly got loads of goodies, her favourite being the Alice In Wonderland bag that was made for her by the lovely lady at Big Daisy Kiss Boutique. She has been desperate for one so I thought it would be a lovely surprise.

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!".

This represents the three of us!

It's a Jennifer Hogwood original and I just LOVE it!

He was a happier boy later in the day

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!

Now though it is 2014 and I am looking ahead to a new year.

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?

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.

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.

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!

So it looks like my boy might have to start earning his keep when times get hard! Now that would be something eh?