So far Kade has had 8 rounds of IVIG. The improvements are enormous. My mind is blown when I look back at videos of how much he suffered physically. He can walk short distances. I never thought I would be sitting here excited by the fact my son can walk from his own front door, carrying his school bag on his back to the taxi that awaits him in the street.
His walking can be variable depending on how tired he is. His balance is not 100% and he still needs to think about moving his legs but not as hard as he used to.
His tic is so tiny now but it still persists. It is not dangerous any more which is a massive relief. The days of worrying about if he’s going to choke on his next meal are well and truely a thing of the past.
For a long time through out Kades illness I just got on with things. It was almost a robotic state I took on. Things had to just be done. You had to get through a day, there was no other option but to survive. I had got to the point of just making sure he made it through the day in one piece.
Watching him recovering, coming back to a physical state where he can function again is an experience that will never leave me. To watch your child fall apart into a million pieces and there being nothing you can do to fix it is terrifying. The only option I had was to leave my fear under my pillow when I woke and press on. I could probably count on one hand how many times I really just lost my shit. I chose to be happy because what use would I be crying in a corner somewhere? Don’t get me wrong there were plenty of times when I wanted to but a little voice in my head would say no, you’ve got this.
To watch him coming back, I can’t put into words but it’s a feeling you feel every day. It is the opposite of fear and terror and you feel it inside your heart. It sits there every single day. Sometimes it’s strong and other times you know it’s just quietly sitting there reminding you. Everything is going to be alright.
Some people have said to me how did you cope. The honest answer is, I don’t know. I have no idea. It must be some kind of instinct that kicks in, you just say to hell with this we are not giving up. Recently asking Kade about when he was really ill he does not really remember much at all. This is something that I would like to get to the bottom of. Why can he not remember?
For Kade I know his one fear was that he did not want to be forgotten about. So I guess I took that and ran with it. Probably being the one thing I could actually do. I made sure he did not slip through the cracks of a system that has far too many.
I read a book this morning which prompted me to write this post. It is called The Little Big Things by Henry Fraser. His book is about how an accident he had while on holiday left him paralysed from the shoulders down. I won’t go into detail as I don’t want to spoil what is a really beautifully written book about his how his life took a complete 360. It is deffinatly food for thought when it comes to looking at life and how your perspective and attitude is actually what will propel you further than you ever believed you could go. So read it, you won’t be disappointed believe me.
So I will keep holding on to those little big things (I never had a name for them before) like Kade walking out the front door and along the street, I will remember that it’s those little big things that make life so worth living. There is a quote that Henry received in a card while he was in hospital, I’ll leave it with you.
Start by doing what’s necessary, then do what’s possible and suddenly you are doing the impossible.