March is cerebral palsy awareness month and I’ve been sharing photos of Wilson for it but I’ve decided to write a blog post too.
It was actually March last year that we were given the results from Wilsons MRI scan and told that he has PVL. It was explained at the time that this was damage in his brain and the reason he wasn’t able to do a lot of things other children his age could, mainly physical things such as sitting up, crawling etc. I’ve had it said to me before “oh, he can move his legs! I didn’t think he could, so why can’t he walk?” He can move his legs, his arms, his full body, there’s actually nothing wrong with his legs, it’s the brain not sending the correct signals to different parts of his body. Each cerebral palsy case is totally different, for Wilson it effects all 4 limbs but his legs more so than his arms. He has spasticity in his hips (again, not a problem with the hips but the brain damage causing this) which is why we are looking into SDR surgery and as I’ve explained in a previous blog post this will take away the pain of the tightness and give him a better chance of being able to sit up and even walk in the future – exciting!!
We were never actually told “your son has cerebral palsy” it was always just brought up in mid conversation between professionals or written down on doctors letters so we had to do a lot of research ourselves.
I’ve said it so many times before and will always continue to say that Wilson does not and will not let this get in his way. I am so proud of this little boy and it may sound a bit cheesy but he genuinely has turned me into a better person, I’ve always been very patient but when you have a child with a disability you have to have patience beyond belief. I’m not going to lie and say it’s easy, but I’m also not going to say it’s hard either, some days it doesn’t even feel like Wilson has any problems and the word “disabled” seems wrong. Then there’s also days where I’m exhausted from hauling heavy pieces of equipment about, setting things up and down again, carrying Wilson while he’s having muscle spasms, trying to remember if I’ve given all his medication that day!
Wilson is an inspiration and I feel very lucky to have such an incredible, determined little boy. I also have to mention my daughter Ava who (especially for a 3 year old!!) has as much patience as I do, if not more! She has to come to so many hospital and therapy appointments too and she never complains, she always encourages Wilson and gets as excited as me when he achieves something he’s been trying to do. He will always have a lot of support and love in his life ❤️
Happy world cerebral palsy awareness month!