The last couple of weeks have been hard here at Lester Towers. It’s the school holidays…cruising on down to the end of week two out of seven now.
Littlest needs constant entertainment otherwise she starts driving her wheelchair around the house throwing things on the floor. And by ‘constant’ I mean you can’t go and put the kettle on. Talking Child has suddenly morphed into a teenager. I’m just stunned by the way they’ve flowered. They went back into school after two years home education last September. Watching them blossom has been wonderful, but also terrifying. I am now living with a highly strung bundle of judgemental anxiety I assume will relax a bit as time goes on and they achieve adulthood. There’s a lot of boundary pushing and on occasion I regret it’s no longer socially acceptable to sign your child up to a career in the navy at age twelve.
To keep us all on point however, I have designated Tuesdays Mandatory Fun Days. We have something planned every week–zoo, theatre, animal sanctuary etc–and I have arranged for Littlest’s carer to help get her ready to go out on those days. And we are piling into the car and having Mandatory Fun. Everyone has to be cheerful and if they’re not they will face my wrath.
So far it’s been two weeks, the zoo and the theatre, and it’s worked. Yesterday we had to change Littlest down to her skin and shower her, MrAL and I and bleach two wheelchairs in the fifteen minutes before we left. It was exhausting and if you’re a carer you’ll find it hilarious but if you’re not, you’ll be baffled. Something always happens to knock us off our stride.
The other thing I’ve been wrestling with is getting the children a vaccine. Government policy in the UK now says that Clinically Extremely Vulnerable children age twelve and over should be vaccinated. And so should children over twelve living with people who are CEV. So both children come into that category. Quite a few of Littlest’s peers around the country have already been vaccinated, some on the advice of clinicians before the government policy change. However in our area, it isn’t happening. I have been pushing formally with emails since mid June and we now haw a clinician’s letter saying she should have the vaccine. But GPs are reluctant to administer it because of liability issues, the hospital won’t do it because it’s a public health issue and the local oversight board keep fobbing me off by telling me she’s on the list. Which is great. But…not actually a vaccine. In frustration I have gone to the media and we had a regional TV chap come round yesterday and interview us about it. I desperately resent having to do it–it’s a waste of time and it shouldn’t be necessary. I’m also very twitchy about the media as a whole–the possiblity of us losing control of the narrative is there and scares me. I just want what’s best for my kids and I’ve been backed into a corner…I’ve explored literally every other avenue over the last few months and this is where we’ve ended up.
Anyway. That’s the week that was at Lester Towers. Tomorrow we go on a family seaside holiday donated by a holiday park associated with the children’s hospice and we are all looking forward to a few days off.