Thursday, 14 January 2016

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!


  1. Lynne - i really wish i was nearer so i could help you, but since i'm not, i'll be sending good karma vibes (and some chocolate) to help.
    Pants about the Disney pass - we had hassles 2 years ago and were encouraged to complain about it by a cast member. I know you have a lot on just now, but if you get time - feedback to them might help.
    It doesn't help when i say that our visit was magical last weekend apart from our cancelled flights on the way out and that idiot in the studio Park, but both were sorted very quickly, with the good karma gods helping us.

    Transition is a nightmare - and ours was a relatively easy one - you live in limbo, they make you wait, then they tell you that you're getting very little compared to childrens services - just at a time you REALLY need the help. I've always said it's like "go on, you're 18 now, you're normal". Disabled kids are cutsy for the "normal" population. Them kids grow up to be adults and it ain't cutsy . Lets face it, the world has known forever that the Jack's and Peter's of this world grow up and they are STILL surprised when they get to 18!!!

    (if you need a friend - i'm there - you know what i mean - may be under 5 feet tall, BUT........!!!!!!!!!!!)

    Will write you a letter at some point in the next few days.
    Give Jack and Holly hugs from the mad woman and take care of yourself

  2. It's so sad to hear that about Disney - I had thought of bringing Smiley one day, but maybe it wouldn't work out (especially as I hate queueing).

    Good luck to Holly, and glad she didn't have to wait too long for the op.

    Huge hugs to you, it doesn't get any easier, does it? Hopefully the transition to adult services will work out better than you fear, especially the respite, which you all badly need xx

    1. Blue Sky - we were in Disney last weekend and had minimal hassle with the pass. BUT - Peter isn't in a wheelchair, so maybe it's a bit easier for us.
      I think to an extent they pander, but Paris is much better than California in terms of getting the pass. We hada to bring along a letter from our GP (could be blue badge for car) and didn't have a problem. In california, i was told ANYONE could get a pass - it was discrimination against those who didn't have special needs
      Hmph says me - so while California was good, we prefer paris.
      It may also have helped that we were there just as the christmas season ended, so while the park was busy, not quite as many people

  3. You've really had a hard spell. I can't imagine how you do keep on. Wish I could do something to lend a hand. Good luck to Holly and her hip replacement. My daughter will eventually need on as well and it scares the shit out of me. Hope you get Jacks situation sorted out as well. You need competent caregivers ASAP!

    Sucks that your Disney experience wasn't all that it should have been.

    Take care. I'll be thinking about you and the kids

  4. It just kills me to hear how Disney treated you. They really are not quite the magic kingdom anymore. Even here it's not what it used to be (so I'm told). Lynn, as for you...I don't blame you for wanting to hideout in your blanket fort!! I don't know how you do it but I know you're a mother, so that explains most of it. We just do what we have to. You are a wonderful mom, so don't forget that part and your daughter is going to be just fine after this surgery and rehabilitation!! Things will work out for Jack too. They always do. One day at a time. One hour at a time. One minute at a time if necessary. Just BREATHE!! Hugs lovely lady! xx


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