The Cube

It breaks me every time.

I hold strong and tape myself together messily with some imaginary duct tape, but still the cracks appear and I weaken with every move of my body, with every breath and bend.

He is a ticking time bomb. Of course he is. His life just got really shitty as far as he can tell. As far as we can all tell. He has no control, he keeps being poked and prodded. 4 needles a day. Count to ten while the insulin goes in. Count to ten while he struggles to get away, to break free of my grip. Count to ten while I hold him down. Wrestling him. Hurting him as gently as I can so he’ll keep still. Just still enough. So the needle won’t break off inside him while I count.

Count to ten.

As I pull out the insulin pens and prep them he asks me every time if he has to have them again today. Yes baby, every day. “And what about a ‘cube’ mama? If they find the cube I won’t have to have the insulin anymore right?” He means cure, and I laugh to think that his world of superheroes and magic cubes has mixed itself together with the reality of his diabetes. A cube, how cute. “If they find a cure, yes, then you will be able to stop taking insulin. > But (I add) they may never find a cure. And if they never do we will always have to do this. But >> (another But is added) they will keep trying to find a cure and hopefully they will find one soon.”

It’s a harsh reality, but the truth is sometimes as important as the dream.

The pens are primed and ready, he pulls out the Buzzy Bee that helps to distract from the pain. We talk about where we will give the shots. He chooses his legs and goes through the order of where the next shots will be given. He likes to make lists and keep organized, I’m not totally unconvinced he doesn’t have high functioning ASD.

Before I stick him he quietly says to himself: “I’m cool.” Yes baby, I say, you got this.

And then it all goes to Hell. He starts to dodge away quickly whenever I get close. The tears start. He begs “not today mumma!”. He keeps saying he isn’t ready. But we both know he will never be ready. I try to give him a minute or two. I can’t wait too long, he has to stay on schedule. I try to explain how important the insulin is. “THEY WILL FIND THE CUBE!” he yells through tears. “AND I WILL NOT TAKE ANY INSULIN UNTIL THEY DO!”

It isn’t cute or funny this time when he says ‘cube’ instead of ‘cure’. To him it means the same thing. I wish there was a cube too, baby. He screams that I am mean. That I am stupid. “Fucking stupid lady, you are not my mom! You are NOT MY MOM!” Tears rush out of him and his body shivers, but he isn’t cold. He is just so angry.

And I am angry.

I never fully recover from the last time we did his shots. I stay trapped in a state of tension, bracing myself for the next time. Knowing full well it will be replayed in just as much horror as the time before – no matter how many ridiculous things I buy to distract him. I feel myself breaking beneath the pressure. I scan websites and books on how to make this all ok again. It will never be ok. It will become normal. It will become manageable. He will stop fighting the insulin shots…eventually. But it will never be fair, or fine or ok. All I want is for this to be over, and it’s only just begun.

What I wouldn’t do to find the cube.

20130323-204935.jpgBear’s new Medic Alert Bracelet.

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Filed under Asperger's, diabetes, strength, Transition

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