There will be certain phrases people say that will never ever leave you.
I will always remember the following from our paediatrician: “Amy is a little girl that will face significant mobility issues and will have many challenges ahead of her. BUT think of how beamingly proud you’ll be when you see her using a standing frame for the first time.”
Now just think about that. Imagine… I had set foot into the hospital that day naively expecting to be told that everything was going swimmingly and that we were doing a fantastic job.
To be told your daughter will need a standing frame is a huge shock when you weren’t even remotely expecting it. I was then met with the phrase “spastic quadriplegic cerebral palsy”.
It was like a slap to the face; one of such severe magnitude that I barely even reacted. I expected to cry, scream or just run… but I sat there and just accepted it.
For months I had been saying to Phil “I’m so glad she doesn’t have cerebral palsy… a lot of kids that suffered Amy’s birth trauma end up with that. We are so lucky”.
Perhaps on some sub conscious level I knew it was the inevitable outcome.
I wanted the ground to swallow me up.I wanted to run away.
I wanted to go to the highest mountain and scream until I was drained of energy and could scream no more.
I wanted this all to go away. I wanted to protect my child. I wanted her to face no challenges.
The prospect of a standing frame had never even entered my mind. I think at that point in our journey with Amy being 6 months old, I sort of expected just a slight delay in her progress. Naïve I know!
Then as months went by it became more and more obvious that these challenges we are facing are here for the long haul.
I remember coming home and collapsing in the doorway and just crying the second I could shut the world out.
I spent the afternoon tube feeding a very refluxy and angry little baby and considering how I was going to tell Phil about the diagnosis. I waited until he had finished his tea.
I could barely get the words out. I distinctly remember where we were sat and how he reacted.
That was a sad night.
He took the next day off work so we could just soak in what we had been told.
It has been over 6 months since that original news… and the standing frame arrived today!!
Amy has her little shoes at the ready and we are very excited for Thursday when she tries it for the first time with our fantastic physio.
Our doctor was right… I WILL be beaming with pride even though I do suspect she will protest, shout and eventually have a face that resembles a beetroot.
We have learned to celebrate EVERY achievement and when we look back we realise just how incredibly far our little girl has come.
There are good days and bad days.
There are days when I am super mum and I will take on the world for my little girl and embrace every therapy going whilst simultaneously doing “normal mum” stuff.
Equally there are also days when I really need my friends and family or I just need to be alone and thoughtful.
There are the days where I want to cry, the days I feel cheated, fatigued, worried, destroyed etc… But it passes!
Seeing the smile on Amy’s face makes it all okay. I am so glad they told us about Amy’s cerebral palsy as early as they did as I use it as a positive.
I know about so many alternative therapies, I know about how our different therapies are helping her achieve her full potential, and I know of the challenges ahead.
The best part is being able to network with other parents in a similar situation and share tips, seek advice and sometimes just have a good whinge about it all.
A good friend of mine once said “quality of life is not defined by ability” it is defined by being loved and being able to love.
We definitely have that and that’s more important than any diagnosis.