It’s been a hectic week. Lots of appointments, lots of work, writing letters of complaint to our PCT, lots more appointments, lots more work, and writing another letter of complaint. In the midst of all this, catching my breath is sometimes a real act of will. These are the weeks when it’s hardest to see the word for the trees, to see the real progress that Boo is making.
But it is there. It is. Take his arm and hand function, for instance. I am fixated upon Boo sitting independently. I cannot wait (what am I saying, I’ve been waiting nearly a year) for him to do this. It will make such a difference: to his perception of the world, to his independence, to how others perceive him, and to my breaking back. But he’s still not quite there. He’s been getting closer for ages and it’s so frustrating in these (I hope) final stages. When I was expressing this frustration to his physio yesterday she helped me see things differently: ‘Well you know why he’s still not there yet, don’t you? It’s because his hand function has improved so dramatically. Sitting and moving his arms is tough for him. If he were sitting independently now, he’d likely be propping using the stiffness in his arms and unable to use his hands. Much better this way round.’ Indeed. Of course, she’s right.
But there is one glimmer of progress that even I can see this week. Actually, it’s been developing for a few weeks, but I’ve been too nervous to blog about it in case I’m wrong or jinx it somehow. This week I feel confident enough that I am not deluding myself.
I think Boo is starting to try to say things.
At his age (17 months actual, 14.5 corrected) Sissyboo was talking in sentences. (How many times have I wrote variations on that sentence since starting this blog?) I know she was ahead of the game, so I haven’t been too worried about Boo’s speech. His developmental consultant wasn’t either, but referred us to speech and language because his brain damage and seizures mean he is high risk for cognitive delay and problems and there is a good chance of minimising the effects of these with early intervention. (8 months on we are third on the ‘urgent’ SALT waiting list!) The Grumposaur has been much more worried about Boo’s speech than me. I figure if Boo can understand us, we are onto something good. And although sometimes I worry I’m deluding myself, Boo clearly knows his name, all of his family member’s names, the names of his keyworkers at nursery and evidently understands words including ‘milk’, ‘lunch’, ‘bath’, ‘no’ (although he clearly thinks it’s a negotiable term) and various others.
But what has slightly worried me is that Boo hasn’t gone through that ba-ba-ba-ba babbling stage babies do from 6 months onwards. He vocalises. A lot. And has lots of vowel sounds (oh, ooh, ah etc). And I never feel like I’m in much doubt as to what he wants. But no babbling.
Until the last few weeks that is. Now we have a range of consonant sounds too. He makes a sound which remotely resembles his sister’s name, and seems to say ‘hiya’ from time to time. We really weren’t sure whether we were hearing what we wanted to and making a mountain out of a mole-hill. And then he started with ‘da-da’. It sometimes comes out ‘a-da’ or ‘and-a’ but we think it’s ‘da-da’. He usually says it when his dad’s not there. And he will copy me (not a hundred per cent reliably but pretty reliably) when I make the sound to him. His voice, like his temperament, is soft, gentle yet excitable.
When he was lying there in that incubator last April and May and I thought about our future, I didn’t usually imagine him walking or crawling (the stuff of some of my most vivid and sometimes distressing dreams now). No: I imagined a toddler him snuggled up against me on the sofa, looking at pictures of him in the NICU and me talking to him about how amazing he was and how far he’d come. And then I imagined him talking back to me. Asking questions because he couldn’t remember any of it.
Like my son, I don’t want to speak too soon, but I have a little fluttery feeling in my stomach telling me that this dream might actually come true. And it is music to my ears.