Accepting that Others Don’t

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.

Scene 1

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.

Scene 2

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.

When Did I Become that Person?

Twelve months ago, things were pretty bad. We were still months away from a cerebral palsy diagnosis (although we knew deep down that that was coming) but we were six weeks post-diagnosis for the infantile spasms Boo had developed. Our already fragile world was cracking before our eyes. The aggressive steroid course had worked, thank God, but Boo got horrific insomnia and so neither of us had slept for months. He had also become unrecognisable as the medication turned him into a bloated, moon-faced, cartoon-like version of himself. And my happy, beautiful determined boy had turned into a little monster, fighting the physical and emotional irritability the tablets induced.

As I’ve documented on the blog many times, I nearly lost my mind. I was severely depressed and had terrible panic attacks. Boo couldn’t flinch without my breathing stopping or my heart racing. Was this another seizure? Were they coming back? Would he regress further?

I remember taking Boo to a physio appointment in early February 2013 (the first we’d had since being released from hospital after the seizure treatment) where I broke down in front of our lovely physio. I hadn’t remembered driving to the hospital that morning. I was so tired that I could barely string a sentence together.

The physio stopped the appointment before it had started. Instead of asking me and Boo to show what he was up to as usual, she sat me down and spent the best part of an hour talking through what help I might need to access and who we might turn to for support. She emphasised how much I needed to look after myself, how I wasn’t going to be able to help Boo or his big sister if I allowed myself to collapse. I had to find solutions to make life more bearable. I left the appointment with a different kind of to-do list than I normally have. Instead of exercises, I had people to phone or email. Appointments to make for me. I felt horribly guilty that I had selfishly squandered Boo’s precious appointment. But I knew she was right. I had to find a way through this.

Twelve months on and things are very different. We had a physio appointment this Monday (we see the physio every two weeks). It was a good one. OK, Boo still isn’t doing things that a year ago I nightly pleaded to any god who would listen that he might, like sitting independently or rolling and crawling. But you know, that’s OK. He has made huge progress. And it’s all about the inchstones, not milestones, around here now. We spent a lot of time in the appointment on Monday laughing and joking and focusing on the good. On how far Boo has come.

Just before we left the appointment, the physio asked me a question: ‘I’ve got another Mum whose recently started seeing me with her little one. They don’t have a diagnosis yet, but cerebral palsy has been mentioned and it seems very likely the diagnosis will come with time. She really needs someone to talk to, someone who’s more used to all this and can give practical and emotional support. She’s not in a good place. Can I give her your mobile number?’ Without hesitating I said ‘Yes, of course’.

As I left the hospital, I started to wonder about this person, like I wonder about people who read this blog sometimes and the comments they leave or search term traces that appear on my stats page. I wished I had her number so I could call her now. And then I started to wonder how I had become the person the physio evidently thought I was. After all, only twelve months ago I was the one desperately needing help and struggling to come to terms with things. I was the one the professionals were worried about. Not Boo. And now, they think I’m someone who might be able to help others because I’ve overcome those hurdles. Because I’m in a much better place.

Really? The possibility stopped me in my tracks.

Of course, I’m not a different person. I am still the same thirty-something woman who sobbed her heart out to her son’s physio and pleaded for help. I still worry furiously about Boo. My horizon of expectation has shifted massively, yes, but I still hope deep down that all major cognitive and physical milestones are his for the taking, in his own way. I still think a crystal ball would be handy, so we can plan for whatever is ahead. And I still get afraid about the economic, emotional and physical challenges Boo will face as he grows up and how all of this affects his lovely big sister.

But I rarely feel the soul-rending desperation any more that nearly caused me to have a breakdown a year ago. In fact, I feel a great deal of hope now. I laugh a lot.

I don’t have all the answers, though. I have so much to learn and do learn so much from all the lovely folks I’ve met on Facebook and Twitter and through this blog. And yet I still mess up. I still get floored by things, often without any warning. I’m still me, it seems.

But the more I think about it, I suppose there is one big difference between the me of twelve months ago and the me now. I have to fight a lot for Boo: fight for support and services he is entitled to, fight prejudice and ignorance, policy, procedure and bureaucracy. It is exhausting and a more-than part-time job. But I rarely fight this life any more.

Acceptance is an easy word to trot out and a very hard thing to achieve, in my experience. I’m also not sure it’s the right word for me. I’m just not sure I accept our life, frankly. For one thing, ‘accept’ is a bit too passive a word for my liking. But I have accommodated myself to this life, for sure. It’s mine, for better or worse, and although it’s hard, the rewards are enormous.

So, maybe I have moved on, after all. I hope she phones. I hope I can help.

On Fathers and Sons

Two significant days roll into one today. It’s Father’s Day, of course, and Mr Boo’s due date anniversary. He is one year corrected now (Boo, that is). There’s no more hiding behind ‘he’s not yet one’ any more. I’ve done that a lot. Mainly to make others feel better. But he’s come so far. We’ve all come so far.

This time last year Boo had been home from hospital for 5 weeks, having spent 6 weeks in two NICUs. He was 35 weeks gestation. You could almost feel the happiness and gratitude in the air as you stamped your feet on the welcome mat at chez Boo (once you’d used a hand sanitizer, of course). He’d survived. He was home. We were all together.

But the happiness was tinged with fear over Boo’s future. I knew he wasn’t going to be unscathed. I just knew. From day 1. As I wept, shook with fear and wrung my hands, Boo’s Dad, The Grumposaur, told me it would be OK, that he wouldn’t worry about problems until he knew for sure they existed. This wasn’t just for my benefit. I think he genuinely didn’t worry at that point.

But now, even without the official diagnosis that should come in the next few weeks, it’s clear there’s a lot to worry about. Our Boo is very different from the neurotypical child we imagined we’d have. He can’t roll or sit independently yet. He’s unlikely to crawl and who knows if he’ll ever walk. He isn’t going to be in the 2028 Olympic velodrome, Grumposaur, at least not in the mainstream games.

We’ve travelled a long way over the past 12 months, The Grumposaur and I. Further, I think, than we have had to in the nearly 19 years (yes, I said 19 years) we have been together. But we’ve both ended up somewhere different.

Several people have likened the process of coming to terms with a child’s disability to the grieving process. If it is, then I’ve skipped some stages (denial and anger) and finally moved through to acceptance, although guilt still haunts me. But The Grumposaur is not in the same place. I hate to see the anger that consumes him; I hate to see him so sad. He’s not in denial any more, but sometimes I wish for his sake that he was.

As a feminist and as a Mum, I don’t think your child’s gender should or does make any difference to your feelings to them. I know The Grumposaur doesn’t love Boo any more than his sister. But I also know it hurts him so very much because it is his son that has been affected in this way. That he won’t lead the active life his Dad had imagined for him, not  in quite the same way, at least.

I wish The Grumposaur and I were on the same page in the grieving stakes. But we’re not. And it’s hard. Really hard. And sometimes we play at rather than live happy families. But mostly I just want to take the pain away from him, to say the things he wants me say (I honestly don’t know what they are any more – after nearly 19 years I don’t know what to say to my best friend – it sucks!). I wish I could tell him about this blog. But I don’t think now is the right time. One day. Maybe.

What I want to say to him this Father’s Day is that we all love him very much. Sissyboo has always been a Mummy’s girl, but she doesn’t him any the less for that. When she gets over the fake anger, she loves it when I am home late from work so she can have a Daddy and Sissyboo party. She thinks his cycling is amazing and loves that the two of them are swimming buddies. Playing animal, vegetable, mineral with him before I read her her last story at night is a highlight of her day.

And Boo? Well he just adores his Dad. When Boo cranes his neck back to look up at him (his Dad’s well over 6 foot) he has a look of real awe. He finds his Dad completely hilarious and a very comfy cushion. I know they will be very close. I know their relationship will be not just rock solid but something really special. I can already see it. I love seeing it.

We have so much uncertainty in our lives. And goodness that hurts sometimes. But this I do know. The Boos and I love their Dad so much and we are so proud of him. And this Father’s Day we will celebrate this and Boo’s unbirthday simultaneously.

We’ve come such a long way and we have a hell of a lot further to go. But, we’ll get there. I know we will. It doesn’t always feel like it, but we are stronger now than we’ve ever been.

So Happy Father’s Day, Grumposaur! And here’s to him and Boo riding tandem round Herne Hill one day. I’m telling you, it’ll happen. Just you wait and see.