The A-word is a big one in the premmie and special needs worlds. Almost the minute after your baby is born early or when health or developmental difficulties first become apparent in your child, healthcare professionals and a host of well-meaning folks start telling you that you are on the road to acceptance and that it will take you a while to get to your destination. But you will get there, they tell you. You may find yourself in Holland at the end of the journey, but who wants to go to Italy anyway. (I, for one, am quite fond of sun and pasta, for the record.)
When I think back over the past year and a bit of blogging, I realise that I have blogged much less about acceptance than I might have imagined I would. It’s true that one of my favourite posts on the blog (because it’s about one of my favourite people) is about Sissyboo’s instinctive acceptance of her little brother. But I have written about acceptance much less in relation to me.
There are two reasons for this. It’s partly that, quite frankly, I don’t like the word all that much. As I’ve said before, accommodation seems a much more accurate way of describing my response to Boo’s challenges. But it’s also simply the fact that since he was three days old, I just knew life would never be straightforward for Boo. Once he had contracted that bloody infection in his incubator, and once we heard that he had sustained a massive brain bleed, I knew what that likely meant. I wanted things to be different, of course. I wished, begged and prayed that I was wrong. But I knew. I’d accepted the difficulties that lay ahead long before we got a diagnosis of cerebral palsy or before I even knew precisely what those difficulties would look or feel like.
I haven’t written much about acceptance on the blog,I now realise, because I have pretty much always accepted things. Or at least, I accommodated myself to them a long, long time ago.
I feel lucky that acceptance has been relatively easy for me. That’s not to say that I’m not regularly twisted into knots or prone to depression, anxiety or the odd waterfall of tears with worry about Boo. But I have seen the pain and anger that others have felt trying to take on board how things are and are likely to be for him. And I am glad that I have never had to feel that and that such emotions have never got in the way of my unbounded love for him.
But lately I have come to realise that I do feel pain and anger (irrational and unkind pain and anger, I think) when confronted with others’ lack of acceptance of my son. I’m not proud of it, but it’s true.
This is the sort of thing I mean.
Me [talking to parent in the school playground]: Yes, Boo’s doing well. Thanks for asking. [An awkward pause while I try to think of something to say that is a positive in our lives and that they won’t greet with that look of pity I find so hard to take… Bingo!] He was given a walker to try out by his physio last week.
Parent: [with palpable relief that I am not going to talk about things that make them uncomfortable like the fact he still can’s sit independently]: Oh that’s wonderful. He’ll be running before you know it. You will be sending him here to school won’t you? He’ll be captain of the sports team one day, I’m sure.
Me [making idle chit-chat while waiting for our mainstream swim class to start while Boo is eating my hair and trying to break my back by going into full extension in excitement]: Boo’s moving up to the nursery room next week so he’ll be with J. We’re really pleased he’ll have a friend there.
J’s Dad: Great. It’s good they’re finally moving him up to be with his peers. He’ll catch up with the rest of them in no time, I’m sure.
These are both real-life conversations I have had in the past two weeks. I could have picked around a dozen more in the same period. All were had with well-meaning and thoroughly nice people. But they left me sad. More than sad. Angry. Not with these people, you understand. That would be wrong. But just with the situation. With the failure of others to come to terms with things as they are.
I don’t know if Boo will go to mainstream school. It’s possible. But his physical needs are severe and he would need considerable 1:1 input. It is unlikely he will go to his sister’s school. Even if he did, he will never be the captain of the sports team. I don’t know if he will ever walk unaided, but the best guess of everyone involved, is that even if he can walk short distances with a frame, he will use a wheelchair much of the time. He will likely never run.
And he will never just catch up because he’s not behind. He is exactly where he should be – no: he’s miles ahead of where the MRI scans suggest he should be – given the extent of his brain damage. Of course, being with his peers in nursery is a great thing. I couldn’t be happier that this has happened and that the transition has gone well. But Boo will never be exactly like his peers. And why the heck should he be? He’s just perfect the way he is.
Oddly, I find the eternal optimism of people we don’t know very well to be much more difficult than some of the doom and gloom predictions of medical folks we see regularly. It’s much easier to prove people wrong (and Boo and I take great pleasure in doing this on a regular basis) than to disprove that others could ever be right. And on the odd occasion where I have corrected people and pointed out that it’s unlikely Boo will outrun Mo Farah one day, but that that’s fine and we don’t care, I have been made to feel like I am a pessimist, have an unhelpful attitude or that I have done something wrong in not doing my best to make other people feel better by painting a false picture of my son’s life and future.
I am aware in writing this that you might think me mean spirited. I hope you see that I don’t blame people for saying these things, but I do find them difficult to take. You see, they are a constant reminder to me that we can accept Boo completely, but they – society at large – will always be judging him according to a yardstick he can never live up to.
So I guess I do still have quite a bit of emotional work to do. Accepting that other people find it hard to accept Boo is going to be one of my trickiest challenges. But I have to work on it. Because my little boy is going to have to do this later in life, and his sister is already having to do it now. And I want to be ready to help them. Because we are in this together.