It was 6.30 am when he broke down and cried, lying next to me in his bed. “I don’t want to have Cerebral Palsy any more mum. I hate it.” He sobbed. “Why do I still have to have it as a grown up too?”
“I won’t be able to walk even when I’m a grown up”.
His twin sister then added. “Why does Hadley have Terrible Palsy?” (That’s what she calls it, bless her heart.)
It was really, really tough (world’s biggest understatement). I struggled to keep my voice calm and not break down myself.
I couldn’t let them see my hurt too. But inside I was screaming - 'I f'ing hate Cerebral Palsy too!!'
This happens from time to time. But this morning, on the eve of their birthday, and because Hadley is finding moving up to year 1 really difficult, it was possibly the hardest of all the times he has asked these questions.
And I was not prepared and still a bit sleepy, which really didn’t help matters.
This is what I said. And I just hope it was good enough. I hope his day has not been too rough on him and that he has not felt so heartbroken and different and like life is so unfair. And I hope Erica is not worried about him or about what Cerebral Palsy is.
I want them to be excited about their birthday tomorrow and not sad. But life is so unfair on both of them sometimes. Living with disability and understanding so much about it at such a young age must be horrible, for both of them.
I said: “I know you hate it darling. And we all hate things sometimes. It’s ok to hate it.”
I explained that I would like to answer Erica’s question about why he had Cerebral Palsy and perhaps that would help.
I said. “When you were in my tummy, your brain grew a little bit differently to Erica’s. Erica’s grew so that she would be really good at being kind and generous and funny and yours grew that you would be kind and generous, sporty and have the best memory EVER! Yours also grew to have Cerebral Palsy. Everyone’s brain grows differently.” (Forgive me medical professionals).
I then said: “There are lots of people in the world with Cerebral Palsy, including lots of your friends and lots of famous people. Like the lady that mummy and daddy went to see who you thought was really funny (comedian, Francesca Martinez).
"And lots of the amazing athletes you’ve been watching in the Paralympics. Lots of people have it.”
I said: “And do you know what, you will be able to walk when you are a grown up. You are so clever and it might take a bit longer than you want, like it took Erica longer to ride a bike than you, but you will be able to when you are a bit stronger. And you are getting really strong.”
I also told him about his Teaching Assistant’s son, who also has Cerebral Palsy, who was unable to walk when he was little, but who can walk and run now. I told him that his mum could barely keep him still and that I was sure she would love to talk to him about how he got strong and started to walk. (I briefed her on the whole morning’s conversation in private at drop off so I’m sure she has worked her magic today, helping to reassure him).
I said: “Perhaps we should not call it Terrible Palsy (Francesca Martinez, this is where you come in). The funny lady that we saw the other day calls it being wobbly.”
They both laughed. I started to feel like I might be helping a bit.
“Why?” they said: “Because her body is a bit wobbly and the word Cerebral Palsy is really hard to say. I think that’s a good word, wobbly.”
They laughed again.
"Perhaps though you might like to choose your own word,” I suggested.
“Silly billly” said Hadley. “I think I might say I’m a silly billy”. Admittedly this is not quite what I was thinking of, but I was just so grateful he was starting to buy into the idea and was not so distraught that I said that sounded good.
“Perhaps it could be something to do with your amazing memory”, I then suggested further. (He has and incredible memory, almost photographic….it’s astounding!)
So, in the teary eyed, early morning, half asleep kind of way we were discussing this, we came up with the idea that Hadley’s brain grew some super-powers when he was in my tummy – and he is Super Memory Boy.
It’s not perfect. It probably won’t stick. But it helped this morning.
There is never a right way to tackle these things, that I know, but all day I have been wondering how other people have explained and helped their children cope with disability and the rollercoaster of emotions that comes with it.
How they have managed to put on a brave face when their little baby is sobbing and you can’t take away the thing that is making them so sad.
If anyone has any insight and suggestions, please let me know. I’m sure this won’t be the last time, but will I ever really be prepared?