Perspective Shifts & Heroes

While my perspective immediately changed the moment I received Charlotte’s Type 1 Diabetes (T1D) diagnosis a month ago, it is inconstant. Shifts like her blood glucose levels and insulin doses.

At home alone, I rage at the cruelty of disease, sob for her pancreas, and consume digital stories from kindred T1D spirits and advocates. With others, I am uncertain. Some people have been astoundingly generous with hugs, questions, and compassion. Many are kind yet perfunctory – not really wanting to think about something that doesn’t affect them. And some, surprisingly, won’t even catch my eye – even though they ‘know.’ All of which makes me teary and full-, though sometimes, heavy-hearted.

While Gloria Steinem has always topped my list of heroes, I have a wealth of new ones:

1) Heartbroken, stalwart parents who help manage their children’s disease, react calmly and efficiently to low sugar readings, advocate on behalf or their kids, try to compensate when their kids get an improper dose of insulin at school, and remain present for their other much-loved children. All the while, doing everything else.

2) Courageous children with T1D who are savvy, confident, strong, and possess an unparalleled sense of self-care and responsibility.

3) My little ones, Max and Charlotte, who are the most hilarious, compassionate, infuriating, smart, zany creatures I know.

4) My husband, Jasper, who remains calm and kind when my ferocious anger makes me a hellion.

5) My parents who underwent the unthinkable with my brother Chris’ cancer and death. Their courage astounds me.

6) And my strong, loving, adventurous sister who has always been been there for me, despite my foibles.

Disease is heady. It transforms each moment entirely. Forces me to be the planner I’ve never embraced and gives new meaning to flexibility. And opens new avenues for appreciation, community, and boldness. I don’t wish it upon anyone.

Prick. Squeeze. Measure. Inject.

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.