Additional Needs

Waiting for the diagnosis

Posted by Emma Louise Cheetham on 27th March 2020 Additional Needs, Advice & Support, Disabilities

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It’s March. It’s the start of Spring. It’s Cerebral Palsy awareness month.

Something I knew very little about before the birth of my child. Jaxon is highly likely to be diagnosed with Cerebral Palsy within the next 12 months. It’s one of those conditions that you have to wait to see how a child develops to see if they have CP, what type they have and how severely it affects their life before you can put a label on it.

Waiting for our consultant to give us the official diagnosis, well it’s kind of like waiting for somebody to rip the plaster off.

I know it’s going to hurt, but I’m prepared for it and I know it’ll be okay.

Last year, after one of our many hospital admissions we were sent home with a discharge letter that said one of Jaxon’s diagnoses was ‘Cerebral Palsy following HIE’. It took me by surprise as that wasn’t how I’d expected to receive the news. When I talked to his consultant about it at a later date, he apologised that I’d read it there but he said that the official diagnosis will come from him and it will come in a face to face conversation. He said it was too soon to give him the label but to be prepared that it almost certainly will come at some point

I knew that. I’ve known that since Jaxon was maybe three months old as his limbs were very stiff. I knew as he missed milestone after milestone that it was on the cards. I’ve felt utter sadness and I’ve cried many tears over it. But with time I’m beginning to develop a thicker skin, I’m starting to accept life as I expected it will never be but this life that we are living can indeed be beautiful in many ways.

I’m prepared for the diagnosis now, I’m as ready as I’ll ever be and in some ways I just want to hear the news officially.

I want that conversation over. Once it’s done then I don’t have to do it again, I don’t have to hear the words “Jaxon has Cerebral Palsy” for the first time ever again.

It won’t change anything, it won’t make anything better or worse. It may make life slightly simpler as more people have heard of Cerebral Palsy than they have HIE. But it won’t change life as it is now, it won’t change how Jaxon develops or the overwhelming love I have for him.

It’ll just be another label. Not a label that will define him. Just a label.