So that hits you where it hurts. ‘Mummy, my legs don’t work’. What do you do with that? With a sting in my eye and a lump in my throat I just replied ‘No darling, but the rest of you is more awesome than you’ll ever know’.
I don’t know if that is right. I don’t know the true party line on how to answer that, or what you are supposed to say when your child realises they are different. To be honest I am still processing a lot of it myself and to then have to explain it to your son was a thing I was dreading. Not dreading to have to have the conversation, but for the fear of getting it wrong.
I was suddenly aware that I needed to ace this answer. Reuben clearly has a strong consciousness of his difference but also of his own person. Over the months that preceded that question, he had grown in self-confidence, in his socialisation and in his self-esteem. I needed in a quick moment to tell him the truth which he fully deserved, whilst maintaining all of those other things. I needed to think on my feet and quickly, and in a pair of pink 4 inch heels that’s not so easy.
So we talked. I told him how his brain doesn’t send messages to his legs like his friends’ brains do, yet he has a superhero powerful clever brain that learnt to do things other brains haven’t had to, to develop and heal. I told him how he had a brain bleed but unlike when legs get grazed or cut, he didn’t need a plaster to stop the bleeding, he cleverly did that all by himself. I told him how he had something called Cerebral Palsy, yet that wasn’t what he was, it was just a small part of him. I told him I loved his brain and I loved his legs. We talked about how no, he couldn’t walk, yet his legs could do so many other things: They made him laugh when he was ticklish. They were so clever to keep him upright in his standing frame. They made Mummy proud when he did his physio and he smiled through his stretches. They got to wear really cool football splints. They were so clever as they were growing and making him so tall. That they have a very distinctive birth mark on his shin that makes him even more unique.
We talked about his wheelchair and that he was the envy of his friends when we ‘upgraded’ his spoke guards to Buzz Lightyear. We talked about how Buzz’s saying ‘To infinity and beyond’ was exactly right for him as the world is his oyster and how a pair of legs that don’t do what they should would never mean he couldn’t achieve what he wants. We looked forward to his electric chair when I would have to race after him and he laughed (I might have made a rod for my own back with that one…)
I have no idea if any of that was ‘right’. There will be someone who tells me it wasn’t. There is probably a book that tells me otherwise. However, it worked for us as he frequently says ‘I have cerebral palsy but I’m awesome’. I love that. ‘Cos he is awesome. He recognises his limitations yet knows his abilities far outweigh his disabilities. That is a lot to understand when you are 5. A lot of that was instilled to him at The Rainbow Centre who concentrated and celebrated the things he could do and not the things he couldn’t. I learnt that from them and we heavily followed this at home. One of the best lessons I ever learnt.
I survived that conversation without too much trauma. Didn’t stop me crying like a nutter when I popped to Tesco later on. (Note – not IN Tesco, in the car park. No one wants an unhinged woman crying into the carrots).
You see when stuff like that happens, the flashbacks come. Far, far less than they did in the early days but when you have such a traumatic event in your life your brain has trouble coping with it. Maybe I should have told Reuben his brain is far cleverer than mine….
Sometimes, it’s hard when a memory decides to slap you in the face. Slapped with the memory of his first diagnosis and how he was not ‘of medical opinion appropriate for resuscitation’. How that led me every day to wondering how I would plan a funeral for a tiny 3lb person if that tragedy happened. Visions of a tiny casket with a body in, as their words had removed the ‘person’ from him when he hadn’t even died. How would my family and friends mourn the short life of someone who meant the world to me but they had never met. Amazing Grace as a hymn and then probably a piece of Battenburg and a cup of tea where no one would really know what to say to me. Can feel and see that like it was yesterday. But it wasn’t yesterday…
That date of diagnosis was 2,078 days ago. I have known about his brain injury for 2,078 days. I reckon I have cried at least a half of those. People think we cope well. People see us go out, have friends, do the school run, have hospital appointments, see me with my hair done and a red lipstick on and think ‘oh they’re fine’. Well, we are. I live with a great husband and have 3 happy boys. What they don’t see is conversations like the above. I try not to let people see me sob in supermarket car parks. They don’t see me up most nights with Reuben in pain, or when the twins aren’t awake how I am in fact still awake trying to make another horrible decision about a medical choice/procedure for them or worrying how am I gonna fight this next battle. They don’t see the lifting and the drugs rounds and the hoisting and me trying to write carers rotas. They don’t see the fear in my heart about who will look after him when I’m not here any more.
But that’s ok actually. I don’t need them to see that as I don’t know what goes on behind their closed doors either and I’m very hopeful they will never have to experience my way of life or have to have a conversation about stuff like legs not working. I hope they know that they’re quite fortunate though. But by the Grace of God and all that.
What was interesting though after the ‘Legs’ conversation and the Tesco-meltdown was that I quickly was able to move on from my heart-hurting flashback and think ‘actually, I need to see this as a good day’. For I wasn’t with the child the medics predicted, I was with a child who could talk, listen and comprehend his own existence. My clever boy, who could ask questions and consider the answers and learn from it. He knew by the end of that ten minutes that we helped him be his best self and we would ‘carry’ him (literally and not literally) always. How we loved him and that to us he was perfection. It was at that very point I really knew how blessed we were and how Mike’s advice of ‘ we just have to love them’ had worked. Only, it hadn’t just worked, it had been an astounding success and we had effectively chosen the right formula to create the perfect family life. Not one society would deem as perfect, but one in which I do.
So, unusually I am going to end this now with a message directly to Reuben. ‘Reuben, if you ever read this in years to come, please know I love you. Your legs don’t work but that would make you what others call ‘normal’. Who wants to just be normal eh?! You are my very unique limited edition. I love you. As you rightly say, you are awesome and do not let anyone in the world ever make you feel otherwise’.
Beauty goes far deeper than effective legs. I hope in time most people will realise that, just like Reuben did.