Sunday, November 16, 2014


I know it's the exhaustion talking. I KNOW it is. Tomorrow, I'll feel better again and I'll be okay. But do you know why Smith-Magenis Syndrome awareness is so important? Because it's so goddamned hard.

Hard, actually, does not even begin to describe it. It doesn't touch it, really, but that is the word that will have to do. Hard.

Day 6 post op and that pain that my daughter was handling so well has come. And when the pain comes because I've not been on top of her meds or she refuses to take them or she was sleeping when they were due, she is very sure to let me know. And yet, she insists that nothing hurts. We've had some extreme tantrums - some that included her flipping over our futon.

She's 7 and she can flip over a futon.

And she's been waking up multiple times per night. Mostly to cry and pull off her pull-up and then yell some more until she falls asleep out of exhaustion. I am now sitting on my unmade bed because she peed in it this morning and so I washed the sheets but didn't get a chance to put them back on. And now I'm so tired, I think I'll just sleep in the unmade bed.

Who the hell cares, really?

5 days straight of this following the near hell that was those hours in the hospital and I'm pretty much at the end of my rope.

Brian's been working 12 hour shifts since I got home. He got up in the nights with her when he was working days, but he's working nights now, so he can't.

So, that explains why I'm so cranky and tired and frustrated and feeling sorry for myself. But these are exceptional circumstances. They will pass.

Sort of.

Because her meltdowns haven't been that much worse, just a little closer together. And I can't help but think about the fact that I've now missed 2 family occasions in the last month because I can't travel alone with Finleigh. Or leave her with anyone for long. And I feel so very left out. And sad. And my waistline keeps growing and I'm horribly out of shape - too tired and demoralized to do anything about it. So, when I carry my 60 pound daughter up the stairs for the third time that night to put her to bed, I am completely winded... like I just ran 5 km. What have I let happen to myself?

She smeared blood from her bleeding finger on the doors and the walls last night. She would not let me put on a bandaid. She would not let me hold her. She would not stop crying. She just smeared blood on the walls. Small mercy - she avoided the carpet. Hooray. And I won't even talk about the toileting issues we've had with her lately. But my friends, it's been daily and smelly.

She's gotten more violent with the boys. She's hitting them more. Throwing things at their heads. She goes up behind them when they're watching TV and hits them in the head. What kind of life is that for a child? You can't even watch TV without wondering if you'll suddenly be hit.

Or sit at the computer. She slipped out of my hands today and went running at her brother from behind, pushing the chair he was sitting on so that his face almost hit the computer.

She's not been impacted by a lot of the medical issues, but we have behaviour ones in spades. And I, for one, am tired of this life. Really, really tired. And yes, we get help. I am lucky and grateful for the help. But dammit, this life sucks.

And then she looks up at me with her brown eyes and smiles her big smile and runs to me and gives me the biggest hug. A trusting, loving, squeezy hug that melts my heart and makes me feel guilty for hating my life so much. And she tries to help with dishes and cooking, but she makes things so much messier. And she dances to her music. And she talks about all the things she loves. And she trusts me. And shows her love unconditionally. And always apologizes after she throws or hits or yells or melts down. Always.

"I sorry mommy. I so, so sorry. Please forgive me. I no do it again."
"I know, baby, I know..."
"Mommy, I not a baby. I a kid."
"You're right, my big, big kid. I forgive you."

Of course I forgive her. I always forgive her. She can't help it. And that's maybe the worst part. She can't help it and there's absolutely nothing I know that I can do about it. I'm trying, but it's like searching around in the dark. And doctor waiting lists slow things down. And trying new drugs takes time. And whatever else we've tried. Or will try. Or whatever.

And that. That is why we need more awareness. We're not the only rare disorder. We're not the only disorder that has behaviour and physical issues. But we still need be known about, because something's got to give.

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