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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My heart breaks for you reading this. It’s so unfair that we can’t just make things right for our kids when it get too much, isn’t it?
oh Kim my heart is heavy for you …as mums we want to make everything better & when we can’t or have to face up to the realities of what health problem IS … Then it is time to admit we can’t do it. It’s hard so hard to watch this in your kids. Hugs Kim. You’ve had a sucky time missing your mum too
Oh Kim, I feel for you, this is so unfair. I wish my words could make it all better, but they can’t. Big hug xxx
Looking forward to seeing you on Saturday to give you a big hug. You are a superb woman.
…and my words won’t make it better either, although I wish they would.
I can’t even begin to imagine. I am still firmly in the realm of magic kisses and, in our house, winnie the pooh plasters. Our only real health issue I can control to a certain degree. I wish I were seeing you on Saturday to give you a big hug but you’ll have to settle for a virtual one.
I hope very much that the doctor listens to your voice of experience and does what is needed for David.
Echoing River. And I am so glad that your man/boy/baby is home again so that you can fight the medicos to get him what he needs. Sending hugs.
I’m hopeful with a diagnosis and some sort of action plan, the school will be understanding and helpful. And you’re right, he is going to have to navigate that whole “how much to help others and keep energy for myself so I don’t crash” thing because he’s very close to adulthood. God bless you Kim. I know some days you want to curl up and stop fighting… at least that’s how I feel sometimes. 🙂
I’m so sorry that there is no cure for this horrific disease. That you can’t just give them a pill or two to make it go away. Dealing with it seems a hard task to me. For everyone involved. Sending you a big virtual hug.
I feel for David, being a teenager is hard, being a teenager with medical issues is doubly hard.
As a mum of a teenage son, who is also broken… I totally get where this is coming from Kim. I only wish my man child was still home with me to help him.
Sending strength, love and faith as only a mum knows, to you all. xxXOoo