“The whole thing just hurts, doesn’t it? Sometimes I look back at my arrogance in the face of this disease, the fact that I thought I was actually going to cure him, and I don’t know whether to laugh or cry”
Now I don’t totally agree with my friend that said this to me, perhaps though I just haven’t yet been beaten up enough by Duchenne, had it rip me open and grab hold of my heart yet. Squeeze the life out of it yet. Chip away at and break my will to hope enough yet.
Who knows, I certainly don’t feel like I’m there yet… I still have a burning desire to fight Duchenne and save lives but it is a terribly hard journey that can lay waste to so many lives beyond the devastation it causes to our children.
But, I do recognise the sentiment… my blind determination and belief in myself ignores it… but in those quiet moments when I reflect, I know it’s there. How could I not? It’s been six years now. Harrison has gone from a four year old boy that could run, jump, hop, climb stairs and get in a car unaided to a 10 year old lad who can barely walk, never mind run, hop or jump… any step, whether a pavement or an inch lip is just way too high and getting up from the floor is impossible. Watching the concentration and the worry on his face when walking about taking a tumble and hurting himself cracks my heart wide open, no parent should have to watch this, no child live it.
I was told recently that having children is like walking around with your heart outside your chest… I can so empathise with that statement but feel like it is concentrated further with a life limiting condition in the mix. Not only are you walking around with your heart outside your chest but it’s being broken Every. Single. Day
He seems to now be racing towards a powered chair, it feels like only yesterday that the manual came into his life… for the first year or two the wheelchair lived in a garage, hardly ever out, now it’s ever present and goes everywhere. The power chair is not far off, and all that that entails… no more normal…