The scariest thing about being the parent of a disabled child? The end. How is Delphine going to cope without us? Not going to lie, the thought pops up at least once a day. How is she going to cope when she is on her own?
It comes up in ridiculous moments. Last night we were getting into bed when I noticed her toenails. Delphine for some reason has really strange toenails. They are like Aladdin’s slippers – curling outwards as they grow. If you let them get unmanageable they become an unexpectedly effective weapon. Eagles would love Delphine.
Unfortunately, because she doesn’t hunt for her food, they need to be regularly trimmed. They don’t have that margin for growth that people with straight-growing toenails have. Because of this, I spend a lot of time worrying about Delphine‘s toenails. How is she going to look after them on her own? Some people worry about climate change, continuing conflict, the state of our economy. I worry about toenails.
I know it’s deeper than that. After all, my English grandmother used to call a chiropodist in her later years. Problems are fixable. The core of my worry is Delphine making her way through a world of able-bodied privilege. I can’t predict her journey. People treat Delphine differently. Her ability to work is hampered. I wish it wasn’t.
If parents of children with special needs held conferences (maybe they do?) this would definitely come up. We’d all be sitting there wringing our hands and worrying about toenails and the like. There’d also be a special section – ‘Ways of ensuring you live until 95 in order to look out for your kid’. Jack and I are both subconsciously living this model. Neither of us drink or smoke and we both think about our health in ways that would probably have been different if we didn’t have Delphine.
I hope if Lulu is reading this she won’t feel neglected. ‘Yeah right,’ I know she’ll say. I go back to that able-bodied privilege. Lulu needs as much love as Delphine and sometimes even more than her sister, but she’s going to be fine. Independent fine.
I’ve got it too – this need to live for as long as possible. And it’s impacting parts of my life that weren’t impacted before. It’s changed me. I think about risk-taking in a completely different way. I’ve become self-protective and cautious about things that never would have bothered me before.
Example One: I used to be an avid runner. Then I began feeling chest pain that was diagnosed as a mitral valve prolapse but nothing significant. The cardiologist insisted I carry on with my running. The chest pain told me different. I stopped running and the irony is that now I’m the unfittest I’ve ever been. Which isn’t exactly a sign of the good health I desire in order to live longer.
There you go. Fear doesn’t make any sense at all.