It’s another big day in Boo Land tomorrow. I know… I need a better blog post opener than that. I’ve been overusing it lately. But to be frank, that’s because we’ve had a tonne of big days in Boo Land lately what with all the anniversaries of what happened or should’ve been. I’m done with it all now. I want the big days to end. I want a bit of peace. I think, I hope, tomorrow might be putting us on the road to that elusive destination.
You see, tomorrow Boo has his big diagnostic tests: MRI (to get the completest picture of his brain damage to date), a lumbar puncture and full bloods and urine tests to rule out genetic or metabolic disorders. We are, hopefully, on the path to diagnosis. A path, I hope, that leads to cerebral palsy, for that, unlike genetic or metabolic disorders, doesn’t scare me any more. (Now that’s a sentiment that 18 months ago I never thought I’d express. I hope my son has cerebral palsy because that means he won’t have anything worse.)
I am not looking forward to the tests at all. Boo needs a general anaesthetic and I don’t like the thought of them knocking him out, of taking him away from me, however briefly. But he needs the tests to be sure we know best how to help him and so that he has the right label to access the relevant services. In actuality, though, a diagnosis (which could follow months after the tests) probably won’t make much difference to our day-to-day lives. With incurable conditions you work mainly with the symptoms rather than root causes. Tomorrow won’t change Boo’s symptoms at all. More’s the pity.
I feel so sad, therefore, that Boo is being put through this. But he has been through worse, I remind myself, and he won’t remember this.
But we will.
We will always remember it. And that’s why I think I am finding this so hard, if I’m honest. I feel horribly selfish writing this, but if I can’t say what I think here on my blog, my virtual therapy couch, where can I? To be totally frank, I feel like what’s being tested tomorrow is not just Boo’s neurological or genetic makeup at all. What’s also being tested is me: my strength of character (or lack of it), my resolve to make the best of all this.
I don’t mean that I feel like I am being tested in a spiritual sense by a god, or Mother Nature, Dame Fortune or any of those entities to which humans (including me, at times) are apt to attribute life’s challenges. No: I feel tested by the game of life itself, a game where I am player, audience member and umpire all in one. And all too often lately, I’ve given myself a slow hand clap, awarded the points to the other team and declared myself the loser.
I’m not the same person I was before having Boo. I am still me at heart, but a slightly more dysfunctional, less on-top-of- it-all, but somehow stronger, reprioritised me. It’s taking a while to get to know the new me and we’re not always as pally as I’d like. If this is a test, I feel like I’m only just hovering around a pass mark.
It wasn’t always like this. I was always quite good at tests. I was a bit of a swot as a kid. Who am I kidding? I’m still a swot. I hated school, but loved learning. It’s why I pursued the career path I have. Tests of learning have always made me nervous, though. I can almost taste the rising nausea I felt before school exams as I write this. And I couldn’t bear all those conversations friends would want to have with me before and after GCSEs, A-levels or Uni finals (‘How many hours did you spend revising trigonometry?’, ‘What did you put for 18c?’). How pointless was all this mindless chatter unless the point was to make everyone around them feel as worried as they were?
The odd thing, though, is that for all my pre- and post-test nerves, I have never panicked in an exam, or in a driving test, or when giving a lecture to over 300 students or to a room full of my peers. I wasn’t even nervous when I set foot, unprepared because of Boo’s seizures, for the half marathon I ran in March. I feel quite calm in such situations once they start. I even enjoy these experiences. Because it’s just me and the thing to be done. And I prep for things (oh boy do I prep for things) and I know I’ve done all I could in the situation. I just do my best. It’s usually fine. I don’t feel the need to compete with others, just with myself. And I have just the right combination of competitiveness and self-loathing to mean I’m quite motivated to do that. I am quite good at beating myself (or beating myself up, if you like.)
But these life skills are worth sweet F.A. in the situation we’re now in. And that’s one of the things that’s so very testing about what’s happened and what is happening to Boo and to his sister (who has had to adjust so much). I prep all I can to deal with Boo’s disabilities (a researcher by trade, I have spent days reading every article I could get my hands on about cerebral palsy, infantile spasms and paediatric neurology, and pored over SEN forums). It helps me. But it doesn’t really help Boo as much as I’d like to think. I can’t prep my way out of this. Ours is a life of triage.
To the extent that tomorrow is a test, it feels as rigged as the grabber machines I’ve just wasted a fiver on in Brighton. After all what kind of test is it when the best result is cerebral palsy? But, of course, the real test is not the one that will give us the diagnosis we all need. It’s how we deal with all of this. In the long term. Mostly, I think I deal with this pretty well. I accept the situation, but I advocate for Boo and I never just acquiesce.
But I’m only human and this takes a lot of work. The house is often a tip, the laundry is a constant work in progress, I remember to pay bills only at the last minute and I struggle to remember birthdays that I would have bought presents and cards for weeks before only a couple of years ago. Sissyboo can’t play grade 6 piano, her haircuts are always overdue (not as overdue as mine, mind), I can’t go in to volunteer at the school on the weekly rota or bake homemade cakes for the PTA at the drop of a hat. I am not as on top of my day job as I would like, but I am working my holey socks off trying to be the best colleague, mentor and old-fashioned good citizen I can be when my resources are somewhat depleted.
I have a hard time accepting my imperfections even when I can accept cerebral palsy. I don’t like the fact that I am not the person I want to be, that I never really was, in fact (who could be?), but have always strived to be. But I am getting there. The greatest test for me is learning that this whole experience is one I can’t prep for. I can just do my best, get some things wrong and some things right as I work towards the end game which is making the best possible life for my kids. And to do that (and this is hardest of all for me) I have to not push myself too much. I have to be kind to myself and accept my weaknesses and my strengths.
But know this, whatever happens tomorrow, next month or in the next decade, I won’t fail you little Boos. I promise you. You are my biggest success story. And I couldn’t be prouder of you both.