A friend asked me the other day, genuinely, how we managed our life with Mikaere. With disability and hardship, and grief. The the truth is, literally, because we love him. Because first we are parents who love their child. And when it’s put that way, everything else – while hard – is irrelevant. We love him. So we meet his needs (which perhaps need a bit more accommodating). We take care of him, and we worry about him and we love him.
Just like any other parent.
That doesn’t make it less hard, but I think people focus on the hardships. On the heartbreak that is having a kid with disabilities. On the grief of walking a path that you didn’t expect to. On watching your child be in pain, and suffer hardships. On having to say goodbye sooner than you would like.
No one chooses this path for their child. No one wants to watch their child suffer (and to clarify – not all children with disabilities suffer. Disability does not equal suffering. But Mikaere has seizures, every day. Which are painful, and awful and I’d class that as suffering). No one chooses to have a child with a life limiting disorder. No one chooses the palliative life for their children.
Please don’t @ me with your feelings. About how sorry you are, and how you can’t possibly imagine, and how strong we must be. Please, no, with the platitudes. This post is not about your feelings. It’s about sharing mine.
The truth is that as much as there is hardship, there is also joy. And smiles and happiness and belly laughs. There is a lot of love. So much love. No one tells you, when you get a diagnosis, about the love. They tell you about the doom and gloom, the worst case scenario. They preach the medical model, which is that disability is awful, and terrible and they’re so sorry.
They don’t tell you about the love.
And that’s the reason that it’s so hard. Because we love. If we didn’t love, it wouldn’t hurt. It wouldn’t be grief. And don’t our kids deserve all the love?
#disability #nonketotichyperglycinemia #nkh #nkhawareness #ifhnkh #metabolicdisorder #glycineencephalopathy #nkhcansuckit #someoneFundACure #disabledparenting #disabledfamily #complexmedicalneeds
