I have previously blogged about the possibility of Will having the SDR operation. I am finding the whole thing very emotional, this probably sounds really strange, but I feel as though we've grieved for the fact that Will would never walk, and that was fine. But now there is a tiny glimmer of hope, and I am trying so so hard not to get too hung up on it, in case we're disappointed!
I don't want to promise will that he will walk one day, and it not happen. For him to be disappointed, or feel like he has let us down!
I'm struggling with it, just like when we got that 1st diagnosis. Its very nearly 3 years ago (1st October), and I can still remember every second of it. But at the same time, it blurs into insignificance. Will has achieved so much more than we ever thought possible.
He has proven them all wrong with so many things, and I am so proud of him. It just sort of feels like he hit a brick wall and hasn't done 'anything new' for a while. and its VERY unlikely that he will walk without an aid, if he doesn't have the operation.
I am pretty sure that we're going to go ahead with the procedure. If nothing else but to keep a hold of the mobility he has. Cerebral Palsy causes deformity. This means that any mobility he has now, as a child, will be ruined as an adult, especially with the growth spurts that come with puberty!
We have recorded the video application we need and his Physio said something yesterday when she was doing it. She told Will's dad and I that she sees will once a week at the moment as she feels his CP is responsive, and she feels like she is making a difference, where as in a year or two, it wont be like that, it wont respond so well, so she will only see him every 3 weeks instead.
This struck a cord with me. Surely if its responsive at the moment, then NOW is the time to have the operation?! Right?
I have been speaking to a lovely lady called Debbie. Her grandson Leo has had the SDR. I think its fair to say he hasn't had the easiest time, but my god has he come on! The progress he has made is amazing! I have seen the video application the made for the SDR and also videos of him walking UNAIDED afterwards and the difference is immense!
I cant express how nice it is, to finally speak to someone who has felt all the things I am feeling right now, to know that its normal and to have a rant to!
"I have sat where you are wondering if its possible to raise the money, If the operation will cause more issues than it will solve, that all the English medics cant be wrong, If you can deal with the stress of raising money or the guilt if you don't"
This puts all my rambling and muttering into one eloquent sentence. I do feel like that. But I also feel like it is worth it all.
Huge thanks to Debbie for answering some of my 93,889,638,989,347,189,303 questions, and just for making feel better!
Read more about Leo here. :) he is very cute!