Is there something about being a parent that sets you out to feel inadequate whichever way you turn? A few times now I’ve read things written by other special needs parents who have said ‘I wouldn’t change X. His condition is what makes him who he is.’ Do I agree? Do I heck! If I could change Pudding in an instant, I would.
Maybe that would lose some aspects of his character, true. The funny dance he does when he wants attention. His wide-eyed earnest look when he’s pointing at something he wants you to see.
But what would I gain? The chance at a more normal life, no endless trips to hospital and the prospect of treatments needed for life. A normal life-span. The chance to shout at him for normal kid things such as not doing his homework or leaving muddy football kit on the floor. I know life wouldn’t necessarily be perfect – I don’t see us all happily sitting around the table discussing philosophy or me clapping proudly as he wins Business Person of the Year. My house will never be an oasis of calm – I freely admit I haven’t got the self-control and patience for that. But I do desperately want my idea of normal.
I know over the next year my attitudes will change. At the moment I’m still fighting against this. Whilst I busy myself looking into support groups, funding for equipment, filling in forms and so on, I still don’t want to accept it. Part of me still hopes for a miracle cure to suddenly emerge, or at the very least for the DNA test to come back and suggest a mild prognosis.
So maybe in a year or two I’ll be one of those parents saying ‘I wouldn’t change Danny for the world.’ But right now, it’s just one more thing that makes me a bad parent. One more reason why I am not as good as them.