This weekend was bookended by two conversations that just a couple of years ago I never imagined I would ever have to have. I was nervous as anything for both of them and I am so glad they are behind me, even though their repercussions are going to preoccupy us for a long time to come.
On Friday I took Boo to see his consultant to get his test results. Yes, these are the tests we had in June, the ones where the results were sent to the hospital in July and I found out by accident 6 weeks later. Results that I had read out to me on the phone by another consultant after breaking down uncontrollably on the phone to Boo’s consultant’s secretary, begging her to get someone to phone me to pass on the information they were sitting on, pointing out that it was immoral to withhold information about my child (information that could tell me if he’s got a life-threatening illness).
Four months after the tests, three since the results were sent to his consultant, I sat down and was talked through the full results.
I was dreading it. I wasn’t dreading being told my child has cerebral palsy. I know that. I’ve known that for much longer than I have publicly admitted. But I was dreading the scrupulous detail the report would contain and which will make no difference to Boo’s treatment. I couldn’t bear the dwelling on things that couldn’t be changed. I’ve done too much of that. And I was feeling awkward about having to sit in a room with a consultant after making a formal complaint about the results debacle.
In the end it was fine. I was offered a box of tissues, but didn’t need them. I wasn’t being brave. It’s just I’ve cried those tears. There are plenty left. Just not for a diagnosis. I accepted that a long time ago. The consultant agreed that the small genetic imbalance they found is a red herring and that there is no point in The Grumposaur or me getting tested at this point, although Sissyboo might want to in the future if she wants kids. And the urine test that wasn’t done quickly enough (and which I hadn’t yet taken the 3-hour round drive to get done again) wasn’t worth doing, he said. ‘If Boo had what they are testing for there he’d already be dead’, I was told somewhat bluntly. Always a silver lining, right?
The MRI told us nothing we didn’t already know. Boo was born early but healthy. He was unlucky (I wish people would stop saying that to us). He got meningitis post-delivery and had a massive brain bleed. It isn’t my fault. It wasn’t any one’s fault. The words ‘severe brain damage’ aren’t my favourite three little words, but aren’t nearly as harrowing as the brain scan images I saw when he was a couple of months old. The images speak much more profoundly than any words on a page. And when I turned back to Boo after reading those words and he smiled at me and said ‘Hiya’, I was reminded of something else that I already knew. ‘Severe brain damage’ means a lot of things, but it tells you very little about our beautiful Boo and his winning personality.
The rest of the conversation went well. Lots of talk about his educational needs and so forth and I left feeling oddly relieved, positive and set for the road ahead. Not so The Grumposaur but that’s not a story for the blog.
It also gave us the resolve to have another conversation. With Sissyboo. Now was the time to tell her, we thought. Tell her that her brother not being able to sit or walk like her friends’ younger siblings is not just (or even at all, as it turns out) about the fact he arrived 11 weeks early. It has a name: cerebral palsy.
I realise some people reading this might not think we did the right thing in telling her at this tender age. She’s not quite 6. It’s a lot to put to a young child. I know.
I share those reservations but as people have said to me at least 100 times since Boo was born, there’s no manual for situations like this. There are books – wonderful books – introducing children to various disabilities or illnesses that might affect their family members. But I haven’t seen one for cerebral palsy. Maybe I’ll write one, one day.
But if people say ‘Why tell her?’ my response is ‘Why not?’ You see so many aspects of Sissyboo’s are already saturated by CP. When her I turn on the telly or sets up a craft to occupy her so I can squeeze in some exercises for Boo. When I have to take her to the school breakfast club so I can take Boo to an appointment. The books with cerebral palsy I borrowed from the library and which I have hidden, because I know she if she finds them, she will sound out the words in her best year one phonics and want to know what they mean. When he goes to hug her (he does this a lot) and he accidentally bashes her in the face because his arms don’t go where he wants them to. When her friend’s 9 month sister comes round and despite being half her brother’s age can cruise on furniture and crawl.
She is not daft. She knows her brother is not like everyone else’s. And she needs answers too.
Of course the cerebral palsy label doesn’t give them. Not to the important questions. To her. To us.
‘Will he go to my school?’ ‘Will he need a wheelchair?’
But it does provide a way of answering the one question we don’t ask but everyone else who doesn’t already know Boo does: ‘Why is he different?’ Now she can answer: ‘Cerebral palsy’. It’s a conversation stopper. And she needs the label to be able to achieve that.
Between ourselves, however, ‘cerebral palsy’ is a conversation starter, a means of opening up the host of questions I know she has about her brother. It’s a licence to ask those questions. She needs that, too.
So when we sat down to lunch yesterday, we told her. The Grumposaur started by asking her if she remembered that Boo had to go to London to have some tests done a few months ago. He explained that we’d had the results and that all the really nasty things that they might have found were found not to be there. Boo was healthy. But Boo had problems.
‘You remember when he was really ill in the hospital just after he was born? Well that illness has left Boo with some problems called cerebral palsy.’
‘What’s that?’ she said.
‘Well, you know that Boo struggles to control his muscles and move in particular ways, that’s cerebral palsy’, I said. ‘It makes things we do easily, like sitting or feeding ourselves or moving about very hard. But it doesn’t mean he won’t be able to learn these things. He might not learn them all. We just don’t know. But we can help him to do as many of those as possible, by just doing all the things we are doing – loving him, playing with him, reading to him, doing his physio.’
I can’t give you the rest of the conversation in detail. It’s too hard to recount. I can’t remember it all. But she was unfazed. She asked the questions we have asked people: ‘Will he walk?’ ‘Will it stop him doing things?’ And she asked those same questions partly because we have been partly infantilised by all of this, turned into helpless children, asking the doctors like a vulnerable infant asks their parents to assure them everything will be alright.
But as she asked these same child-like questions, I was struck by how very grown-up Sissyboo was. You see before we had time to respond, she already had answers. ‘Will he walk? Oh, [she is smiling now] he might need a wheelchair mightn’t he? Daddy, did you see the videos of wheelchair basketball on Youtube?’ ‘Will it stop him doing thing? Actually, Mummy, it won’t because we will just make things happen for him. And he’s very determined, my brother.’ (Well, he has a great sister to teach him these things, I thought…)
We talked about lots of other things. And she hugged her brother and messed about with him by pulling faces and making him giggle uncontrollably as we spoke. Then we asked her if she had any questions. She said she didn’t, but she did have a story to tell.
The story was a fabrication. Sissyboo doesn’t lie very much by 5-year-old standards, but she does make up imaginary scenarios involving fictional people from time to time. It’s clearly a way of her asking questions she doesn’t know how to ask, or solving problems she can’t work out in other ways. I suppose it’s the 5-year-old equivalent of the teenager who tells her mum she has a friend with this problem, rather than admit the problem is her own.
She told us about a fictional couple where the Dad has CP (in the course of the conversation we’d told her that the husband of someone she knows – a dad, who can drive, has kids and is therefore the epitome of normal in her mind has CP) and the Mum then divorces him because she is worried that any kids they have might catch CP. Now, there’s a whole bunch of stuff here I’m not minded to analyse for you, but she was clearly worried that CP might be passed on genetically, or more pressingly, that it was contagious. It wasn’t that she thought it was catching, because, it turns out, she knew it wasn’t; but she was worried that others might think it was, and she wanted strategies for dealing with their ignorance.
She was also clearly worried that people would ostracise Boo as he grows up. They will, I thought, but we have to teach him not to let it bother him. That’s a conversation for another day. Because this is the first of many, of course.
I know it will take time for the words, and their slippery meanings to percolate her consciousness as they have mine. And I know that some days she will be fine about it and others she will feel confused, sad and as if the world is a hostile place that has to endured rather than lived in. I know, because she is my daughter.
But I am so proud of Sissyboo. I am so proud that while we talked through stuff no child should have to hear about a sibling, she looked at her brother and in the face of the words, she saw beyond them them to a little boy she loves more than anything else in the world. A little boy with a happy life ahead of him if she has anything to do with it.
I am proud because her question about the fictional family shows that her first thought was for Boo and his feelings not for her own (important though they are – and I don’t forget about them). In her mind, this is happening to her brother. There was no ego here. No prejudice. Just a beautiful young person’s love for her sibling.
I have two wonderful and beautiful kids. So please, consultants and medical professionals, don’t call me unlucky. That’s one label that just doesn’t stick.