Salacious title, eh? At least to my oft-in-the-gutter mind. A bawdy romp broken down into crass elements devoid of steam and emotion. I wish. Rather, this is my nine and a half year old daughter, Charlotte’s, routine at least five times a day (including 2:00 a.m.) since being diagnosed with Type 1 Diabetes (T1D) three weeks ago. That would be March 22, 2012. Ridiculously amusing that there are so many twos in this date, as my last post was all about the auspiciousness of ‘2012’ the number and year. Instead we got angst and chaos: a chronic autoimmune disease for which there is no cure. Harrumph and holy hell.
Charlotte tests her blood glucose level by pricking a finger, any finger (hooray! she has ten), squeezing a salty drop of blood (heaven forbid she’s got a cold finger), and feeding it into a meter that discharges a number within five seconds. Her blood glucose number dictates everything and how we react. Low (anything below 80)? Chug some juice, Charlotte, because a low might make you lose consciousness and have a life-threatening seizure. Sit tight, don’t exercise, and check your level again in 15 minutes, maybe again in another 15, and have a snack – if your level goes above 80. High (anything above 180)? Correct with an insulin injection. Normal? Non-existant.
And that sums it up. No normal. Charlotte’s insulin injections change multiple times a day based on what she eats, her stress, ever-present exuberance, hormones, exercise. Pretty much everything. Imagine your child shooting themselves up with anything multiple times a day. I almost can’t bear to watch her insert the little needle into the “fat” on her tiny arm. It’s absurd. Here is a being whose body is killing what enables the rest of us to eat and make energy – insulin making cells. They won’t revive, come back to assert themselves, dance a happy jig. Give major blessings to your pancreas; my girl and countless others with T1D have a pivotal organ that doesn’t work. They are dependent on expensive medicine and rigorous self-management. Forever.
While I have found strength and purpose that waned since losing my job, I’m furious and bereft. Incredulous. I suppose what I always imagined as a blog about my experience as a surviving sibling of a brother lost to cancer will now be one about the survival of my daughter and our family, our growing new T1D community, our stresses and triumphs.
F#** and a new call to action. Pricks, measurement, and injecting always were about partners. Measurement was and will be about me. And the survival of my daughter.