“I wouldn’t change him for the world” is something I’ve heard a lot of parents of children with disabilities say. Just the other day Katie Price was on the tele talking about her son Harvey and how she “wouldn’t change anything about him”. While this is all very lovely, if your child is suffering or struggling in some way, why on earth would you not want to take that away?
Nine years ago I gave birth to the most beautiful creature I’d ever laid eyes on. I couldn’t stop staring at him, I needed him near me all the time, I adored his smell, every inch of his skin. He was perfect. My love for him is like nothing else that I’ve experienced before or since. Both the best and the worst times of my life occurred during the first year following Leo’s birth and in the nine years since he has had a small pile of diagnosis’ put on his, and my, shoulders.
There are good days, so many of them, but there are also bad days. Days that I wish I could take it all away, days I wonder what life could have been like had it not been for that tiny little fault on the Cep290 gene. A lot of grieving took place during the first year following diagnosis and like a death you never really ‘get over it’. Every single decision, big or small is harder and more complicated… which school, which bed, childcare, swimming lessons, after school clubs, where to live, working, not working, consequences for bad behaviour, his future… the list of above averagely difficult decisions go on. Factor in being a single parent as well. It’s tough.
Yes we travel, yes we have a good life and yes I am so very proud of every single achievement Leo makes. Becoming his mum has made me a far better person than I was, but would I change him? Would I take his disabilities away if I could? Yes, I bloody well would.