October marks World Cerebral Palsy Day. Countries all over the world go green to raise awareness and support the millions of people who live with the condition.
This time last year, what I knew about Cerebral Palsy I could’ve written on a postage stamp.
It didn’t directly affect me and whilst I’d met people with the condition, it wasn’t something that I was all that familiar with.
Fast forward just twelve months and I’m coming to terms with the fact I learned that Jaxon has CP by reading it on a discharge letter after a week spent in hospital with a chest infection just a few short weeks ago.
Now I’m not completely naive.
Jaxon took a long time to be resuscitated.
He has global brain damage. He has stiff limbs and a weak trunk with very little head control, I liken holding him to trying to cuddle a moving plank of wood on some of his worst days. He doesn’t feed orally. He doesn’t use his arms and legs like a typical baby. He has uncontrollable seizures.
I knew the diagnosis was coming.
But I read the discharge letter on a Sunday evening, sat alone in my flat whilst Jaxon slept in his chair beside me.
“Other relevant history - Cerebral Palsy following HIE”
It hit me like a lightning bolt out of the blue. I’d prepared myself for the diagnosis yes, but in a room with Jaxon’s paediatrician.
I’d have time to absorb the information and ask all the questions that would pop into my head.
THIS was not how I was supposed to find out.
I felt vulnerable, lost and utterly bereft. I cried. Not for the diagnosis but for the lack of empathy in how it had been delivered.
I went through a range of emotions that evening. Anger, sadness and guilt were the main ones.
I know that a diagnosis of Cerebral Palsy is far from the end of the world. Many many children lives happy and very fulfilling lives with the condition.
It also opens doors for us to access more services and receive more support. When people ask about Jaxon, rather than explaining that he has HIE, a condition that nobody has ever heard of unless it has affected somebody they know, I’ll be more inclined to tell them he has CP.
So how do I feel about my son receiving a CP diagnosis?
In all honesty, I’m still not sure if it’s completely sunk in.
Maybe that’ll come when I have chance to have a discussion with Jaxon’s consultant.
All I know now is that when I look into the eyes of my beautiful boy, I don’t see a disability.
I see a baby. A baby who just wants to be warm, loved and fed just like every other child his age.
Yes he may have complex problems but underneath it, he’s got the same needs a typical baby has too.
Of course I feel sad. I feel angry. I feel guilty.
But I will do everything in my power to channel these feelings into helping give Jaxon the best possible life, however that looks.
Jaxon may have Cerebral Palsy, but that does not mean that Cerebral Palsy will have him.