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!