So, where was I? Oh yep: all at sea. Feeling pretty desperate and hopeless about the prospect of keeping my job and our home in the face of our Local Authority and their refusal to up Boo’s 1:1. Things got really bad. I had my resignation letter drafted in my head. I was thinking about a big move. I was stealing myself to try to explain to Sissyboo that we would have to leave our home, her school and our friends, and trying to persuade myself that we could move to a different area and start again at the bottom of all those service waiting lists. Who needs work, right? Who needs money?
But miraculously things turned around.
Well, I say miraculously… My child has cerebral palsy. I don’t believe in miracles.
But I do believe that hard work and determination can make anything possible. The hard work of doctors and nurses to save him. The slog of therapy that has enabled to sit for very small chunks of time and has brought him some speech when I was told that neither of these things would happen for Boo.
Taking inspiration, as we always do, from him, I wrote letters. We took legal advice. We contacted our MP. We went as high up every relevant food chain as we could until someone in the hopes that someone would throw us a lifeline. I kept phoning people, writing emails. Making our voices heard. It was exhausting. Someone offered to help. We’re still not out of the water. The solution has not yet been realised. But we can see the rescue helicopters overhead and the shore in the distance. Things should be OK. I cannot tell you how good it feels to write that.
So we celebrated, drinking a bottle of pricey fizz despite the stress headaches we’d been sporting for nearly 10 months. We walked around in a daze for at least 48 hours, not quite believing things seemed to be turning around. It was an amazing feeling.
And then it stopped. Nothing happened. Nothing bad, I mean. But I felt this panic rise up from belly one morning and it hasn’t gone since. It’s been over a month now. And it’s still there.
It’s not depression. I know that old foe well enough. No: I think it’s a side effect of long months of self-preservation.
A tidal wave of worry hit me that day. Worry about Boo’s hips; worry about schooling; worry about my failing back and the pain I am in (and what this means for my ability to look after Boo); worry about Sissyboo’s behaviour at school; worry about potty training; worry that the lifeline will get pulled back out of our reach just before we have time to grab it.
All of these fears (and many others beside) are real. None is irrational. All need worrying about because all need action (some urgently). Coming to this overwhelming realisation just days after feeling like I might just have had the winning lottery ticket felt cruel. But it’s hardly surprising.
I felt as if I was being suffocated when I let my mind wander onto these things. Suffocated and paralysed. Why was I being like this? Couldn’t I just take good things any more?
No: of course I could. (See fizz reference.) But what I came to realise was that in order to get to the point where we had something good, finally, to celebrate, I had forced myself for months to overlook so much. In order not to break, I had let myself off the hook of fretting over some things. I had unwittingly prioritised our worries into one gigantic list and only acted on the most pressing. I would have snapped if I hadn’t done so, I think.
I guess this was my version of a behaviour many have recommended to me since having Boo: putting on my oxygen mask before other people’s. Yep: that’s what I was doing.
But you know what I came to realise? In doing that I had forgotten how to breathe on my own. So when the oxygen mask was eventually taken away with the problem it had helped me through I was left gasping for air.
To be honest, I still am.
Don’t get me wrong. The frustrations and worries aside, we have lots of fun every day. We laugh, giggle and marvel all the time. But when I wake, go to sleep or have a rare minute or two to myself, I am working my way down the worry list I had repressed for so long and trying to remind myself how to breathe again.
I haven’t been very successful so far. I hope my return to blogging might help. I hadn’t meant to stop for so long. It just happened.
I hope you’re all still there.