Last night I had a variation on a recurring dream. Boo was smiling at me (he always smiles in my dreams as he invariably does in life). And then he nonchalantly clapped his hands. I cried tears of joy. I woke up with damp eyes. I have dreams like this (in which Boo runs up to me in the local park arms outstretched or, weirdest of all, Boo crawling as a 29-week 3lbs 11oz prem baby in his incubator) at least once a week. And I love these dreams (OK, not the incubator one: that freaked me out). You see these dreams give me a glimpse of a life I want for Boo. That if I see it, even if only in my sleep, I dare to believe might actually come to be. But I admit, it’s hard not to get a little down when I wake and those sleepy tears of joy turn into the quiet sobbing of regret. When I remember that he can’t do those things and, if I allow myself to be honest, that he may never be able to do some of them. Ever.
For those of you who might not know the indomitable and gorgeous Boo (you should, he’s amazing) here are some things to know. Boo probably has quadriplegic cerebral palsy after sustaining a significant bilateral brain bleed at 3 days old (he was born 11 weeks early) when he contracted meningitis. We are awaiting the test results to confirm that tentative diagnosis. He also developed a form of epilepsy (infantile spasms) at Christmas which can cause physical and cognitive regression. Although the seizures are under control they can return and the damage may already be done. At nearly 15 months (or 12 months corrected) he can’t sit independently for more than a few seconds and his trunk control is not great. He has dynamic arm tone (so the tone varies from the normal to high or spastic) which means he can’t manipulate or reach for objects with ease (although he does do both in his own energetic Boo-like fashion). He can’t crawl and likely never will. He can’t roll either.
He gets quite frustrated, as you can imagine. But he is also one heck of a determined chap. His developmental progress is glacial but every step in the right direction is huge, I tell you. Nothing comes naturally to him. So when he opens his hands, uses a pop up toy, gains arm function in sitting or rotates a bit on his side I feel pride to a degree most people (thankfully) can’t possibly imagine.
That’s why I am 120 percent behind this fabulous new fortnightly linky ‘Small Steps Amazing Achievements’ hosted by Ethan’s Escapades, and a lovely lady who knows just how I feel when these inchstones are reached. I hope to be a regular participant. (No pressure, Boo, but get with the programme, already.)
I’ve already blogged about some of Boo’s more recent achievements and wanted to write something new for today, Since Boo cooperated (thank you, young man) at his last physio appointment, I can.
It is with huge excitement that I can tell you that we’ve added a new exercise to our physio repertoire: supported stepping.
You see Boo doesn’t do things in the right order. We can’t wait for him to sit (as you would with a neurotypical child) before moving on to more advanced skills. Of course it would help enormously if he could sit, but the wait for him to perfect that skill could take some months yet. And although physically they won’t put Boo past the 8 month mark because of this, cognitively he is a one-year-old and knows what he should be doing even is his body doesn’t always do what he wants it to do. He bears weight enthusiastically. He wants to stand. He wants to walk.
So when his fabulous physio said ‘Shall we try some walking, Boo?’ He smiled and my heart stopped. Of course his trunk control isn’t good enough for him to walk with us holding his hands as we did with his big sister when she was 11 months. Instead, the physio had to put her hands under his arms and encourage him to elongate one side and transfer his weight to the other.
But you know what? He did it. He bloody well did it! He lifted his leg, not a little but a lot, and he grinned like you have never seen anyone grin about anything. The tone in his legs kicked in and his legs came inwards but as the physio said, we can work on that. He kept going for about a metre for what were some of the happiest moments of my life.
You see these steps were not just an amazing physical achievement. To me they were a symbol of his determination, of how far he’d come. And although they don’t signal anything much in a predicative sense (who knows if he will ever walk unaided) they offered me something that (optimistic though I try to be) I badly needed that particular day. Hope. Hope that his future is brighter than I could dare imagine on our toughest days.
Small steps. Big deal. And this time, I wasn’t dreaming. I know. Because I pinched myself. Just to be sure.