A Blog About Matthew

At the back of Arabesque, there’s a brief mention of Matthew and the amount of care he needs. I’d thought I’d do a quick blog about our life at the moment, not just for a whine and a moan, but because a blog is something to look back on. A good example is my post from 2009: Fun With a Wheelbarrow which is such a silly memory of carting Matthew round the streets in a wheelbarrow and it always makes me laugh. It was a fun day, and something to look back on with nostalgia. But sometimes it's important to look back on the bad times too, which is the real reason I'm writing this entry.

Me and Matthew, at Wookey Hole during the summer.

Things are particularly tough at the moment, for Matthew in particular, and then the rest of us. Three weeks ago, Matthew had major surgery: a femoral osteotomy in both legs, which involved the bones of both legs being cut, rotated and re-fixed. It was a five hour op, and luckily, both legs were done in the same op so he doesn't need to go back.

bed-time meds

He had a week’s recovery in hospital, and then he came home on six weeks bed rest. We’ve got his bed in our front room because it just wouldn’t be fair to confine him to his bedroom – apart from the fact that he doesn’t fully understand what’s going on. As far as he's concerned, he went to sleep in hospital, and woke up with lots of discomfort and pain. We've got to keep on top of this as best we can because Matthew can't tell us what he needs. As you can see in the photo, his night-time meds are a bit daunting. There's actually one missing.

Day to day, he needs lots of moving and cleaning and changing, and all of that causes him pain and discomfort. But nights are something else. We have medicines that help him relax and sleep, but for some reason, they aren’t doing their usual job. Perhaps it's the pain he's in, perhaps it's stress and having had such a big change to his usual routine. 

Matthew and brother, Jack

Usually, on an evening, Matthew sits next to Paula, getting a cuddle while we watch TV. He can't have that at the moment and we can see how much this distresses him. But whatever the reason, we’ve had nights when he’s been awake, moaning and unhappy, all night long. And we've had nights where he's settled and slept until 2am, then woken up and moaned from then on.

So me and my wife are pretty zonked at the moment. It's also affecting his brothers, because if we're tired, they feel it, and sometimes when we're up through the night, they get disturbed too. 

During the week, I go out to work and Paula is confined to home. When I get home, I try to help out with Matthew. So ultimately, there's not a lot of writing getting done just now. But that's okay, because in a few weeks things will be back to normal. And when that happens, and I'm sat at this laptop wondering whether to waste time on Facebook, I can read back through this blog and get back on track, in the hope that one day, I’ll make enough money to be able to write full time...

... in a massive bungalow, with a boiler that works, a hydro-therapy pool for Matthew and a kitchen so big, you can park a car in it.