There was a time when a magic kiss fixed everything and what magic kisses wouldn’t fix, a wiggles band-aid certainly could. It is a sad day in a mothers life, when she realises that the one sure fire cure in her arsenal, just doesn’t work any more. That the magic has faded from her kisses and that wiggles band aids are made for little chubby fingers, not almost man hands.
I don’t often think of myself as the mother of disabled children, I certainly don’t think of my husband and children as disabled.When I think of disabled children, I think of the stereotypical image of a brain damaged child in a motorised wheelchair.
But I am, the mother of disabled children. My children are broken, betrayed by their broken gene and dislocating joints.
In my broken family Veronica and The Spouse are two of a kind, they both have a strong work ethic and they both treat their disabilities with a nonchalant disdain. They battle furiously on, until they collapse in their various heaps, gathering their breath, marshaling their strength and poking their respective ribs, shoulders and hips back into place.
David and I are of the same ilk, we both coast along doing just enough to pass, whilst also giving of ourselves to all that need a hand. We are the ones with the ready ear and the solutions, the broken naturally gravitate towards us. Or more especially the broken gravitate to my son. I learned a long time ago how to ration myself so that the psychic junkies didn’t drain me dry. This is a skill my son needs to master, but it is also a skill that only comes with growing up.
My son, my youngest child David, will be eighteen next month and somedays he is so broken it hurts me to watch. It is hard enough navigating the minefield of young adulthood with out having to deal with a broken body as well. I often wonder if I am in some sort of denial about the extent of David’s Ehlers Danlos or if it is just that I am so used to my husband and daughter being broken that I don’t think too deeply about it anymore.
My refrain in the mornings as David complains of feeling sick has always been, “You will be fine once you get to school.” As I pushed him into the shower, into the car, onto the school bus, out into his life.
Pushing him to push through himself.
David is in bed as I write this. He is having his first Ehlers Danlos Crash, he has pushed himself for so long that his body has pushed back and said STOP. I have a thick lamb stew on the stove and I am letting my son sleep. We have a Doctors appointment on Monday and then I will begin to push again. This time I will be pushing the Doctors to do what I want. I fought for seven years to find out what was wrong with my girl. Veronica has cleared the path for her father and her brother and armed with the knowledge and the support of my daughter I will try and make things a bit easier this year for my son.
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