Chasing a Cure

In the 19 months and 7 days that I have been a T1D Momma, well meaning friends have shared articles about the newest study or trial for the BREAKTHOUGH CURE, the panacea that will eradicate Diabetes from our lives. And while I know that these posts come from a place of love and concern and caring, I am at best pessimistic, and at worse a little angry everytime I see them. 

You see, the FDA sees type 1 as managed, so it's never at the top of the heap of things to be approved. And, God knows I've learned, that just because there is a treatment, it doesn't mean it's covered by insurance, or accessed by anyone with a limited budget. My other kids need to eat too. When copays for life sustaining medications get doubled and the amount covered gets cut in half each year, the idea of THE CURE being something I can afford? Laughable. 

You see; being the parent of a diabetic is waking up every day and watching your child dart into traffic. Every. Day. Every meal, every hour they exercise, every cold, every stomach flu, every fucking breath, they are BASE jumping with a shitty tattered parachute. 

I can't hope. My capacity for hope has been exhausted by our daily living. It's not that I don't appreciate the intention behind the sharing, I do. I just can't even fathom what happened to my girl. I can't even comprehend that she walks around wearing life support. SHE WILL DIE WITHOUT THESE THINGS, THESE VERY EXPENSIVE AND IMPERFECT THINGS. Every day that I wake up I am one day farther from before, and I yearn for it more. Hope is a dangerous thing. When you dodge traffic every moment of every day. 

Rockstar Human

Leaving this here for a time when I need a reminder that there is a rockstar human under the snark and sass:

"I'm sorry I cranked at you and your brother on Sunday. It wasn't you. I was projecting."

"No worries Mom. I could tell."

Disjointed Psuedo-Rant

Posted about 6 weeks ago on Facebook...

I am still grieving before... Insulin is not a cure... It is life-support. Please Heart, beat from love, not from fear...

Dumb and Lucky

"She made some comment about being thirsty at the end of school. It was right when it was really hot. Then the wounds that took a while to heal. And the insomnia... And I didn't know she had actually lost weight until they weighed her at the er. Each thing could be explained alone, and none was so glaring. But put it all together... I had an actual conversation with Rich musing that sometimes I thought she might be diabetic, but then put it off until her physical. I'm just so glad she wasn't in dka. I'd feel so guilty then. Now I just feel dumb and lucky."

This was a conversation with my friend C, written last night. This post will not be eloquent, or cogent. I'm too raw for that.

Isabella has diabetes. My daughter is a diabetic. MY DAUGHTER HAS A CHRONIC DISEASE. IT WILL NOT GO AWAY. IT MIGHT EVEN KILL HER. And I had an inkling, a hunch, and I ignored it. I wrote it off. I am a fucking paramedic and I didn't see it. My baby was sick. I did not see it.

I took Isabella to have an infected finger drained Sunday morning. In the evening she ran a temp so we went back to our local ER as per discharge instructions. They did a urine dip just o rule out a UTI. It came back. Our focus then changed. Massive amounts of glucose in her piss. A finger stick. 438. Fuck fuck fuck. There's no other real reason. An IV, labs,. Some good news, no DKA yet, only slightly elevated creatinine, her kidneys were not yet in a bad way. Transfer to boston, drive to MGH in the middle of the night because GOD DAMMIT I will not be that medically unnecessary BLS transfer at 1 am. Pedi ER, insulin, IV fluids, tears creeping up when she isn't' looking. Admission. Specialists. So many doctors. I give our history just like she was my patient, they call me on it. Time to be a mommy.

We met our team. Dr McGill is sweet and kind, reassuring. First round of education so we can go home. I give my girl her insulin. It feels unreal. I haven't slept. Rich went home, Kat came to be a ride home and the rock that she is. I pick up all of our medicine and syringes, we are discharged. Home. 38 hours. No sleep.

"I'll never feel like a normal kid again."
"I can't believe I have to do this for the rest of my life."

Me neither.

She is amazing, my girl. The next day she did her own finger stick in the morning, and by evening had done her own insulin injections. She's taking this and running with it. New normal. We will find it.

Let's talk for a moment about insurance and gratitude. Before insurance a month supply of insulin, both kinds, and the test strips and syringes, all the bells and whistles... TWO THOUSAND FUCKING DOLLARS. After...Two Hundred and Thirty. Gratitude.

HOLY SHIT. Isabella is diabetic. It sounds so strange. She tells everyone she meets, strangers. I ask her if she's trying it out, to see how sounds. She nods.

I blinked. Life changed.