Shock Baby

Shock isn’t momentary. It can last a long time. I’ve been managing shock, often with grace and sometimes with ugliness, this past year – holding it, caressing it, disdaining it, wallowing in it, but never coming to peace with it. A year is a blip some say. But when every day, every moment, every bite my daughter eats, makes me painfully aware of the precariousness of life, it’s a damn long time.

I haven’t written for eons; I’ve been immersed keeping Charlotte alive and thriving, and Max engaged and knowing how great he is when the energy of a family is spent unfairly on one child whose life is in peril. And I don’t say that lightly. My girl can’t live without costly insulin and the devices that administer it to her 24/7. People tell me I’m lucky, that we can manage T1D. That it will get easier. Sigh. A chronic autoimmune disease for which there is no cure, which makes my girl dependent on a regiment of taxing self-monitoring, insulin administration, and constant vigilance is not easy and it never will be.

My girl’s every new experience demands I educate and advocate, making sure people with whom I entrust her have minimal knowledge of how to help her if she’s low or high – or heaven help them, comatose. I loathe this process. Instead of feeling empowered that I’m passing along pivotal information, I worry that people will be overwhelmed with the responsibility of Charlo’s life. And I know that despite best efforts, they don’t really get ‘it.’ The relentlessness, the long term health risks of highs which are numerous and heady, the fact that a lick of a brownie-batter-covered spatula, a banana, or a small handful of potato chips will send her blood sugars crazy high unless she compensates with insulin. Something she needs to do BEFORE said delicious morsels pass her lips. Not easy for a 10 year old.

A couple weeks ago, Charlotte slept with her two dearest friends on the trampoline under the stars. Awesome! I’m thankful that she was confident enough to do it. But, I worry that she won’t wake up. That her sugars will drop to perilous levels. That she will die in her sleep. Not a bad way to go, especially if you’ve lived a long life. But she is ten. My baby, whose resilience and fortitude are unparalleled. And shocking.

She is at ‘normal’ camp this week. For kids like the rest of us whose bodies work as they should, yippee! And for my girl, whose body is her enemy, whoohoo! You rock. And likely my shock and heartbreak won’t end. My admiration for Charlo and Max, who quietly deals with so much, is boundless.

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Anything but Normal, Thank You

Tuesday I returned from taking Charlotte to a spectacular horse camp, Ekone, in Goldendale, WA. It’s a 2.5 hour drive from Portland – not usually significant, but it’s a ‘normal’ camp, not one dedicated to kids with T1d. And I left her there. With only cursory instructions for the staff who are responsible for 20 other kids as well as my newly-burdened girl.

Charlo and dear friend, Olivia, at Ekone

Charlo first went to Ekone last year with her best friend, Olivia, and loved it. She and O talked about it longingly all year and were excited to go back. But that was before disease. Everything is different now: every excursion, new teacher, new friend, experience, laden with the need for preparation and explanation. Tainted. It’s exhausting and damning, yet necessary and oddly empowering.

Ekone agreed to have Charlotte on the condition that I spend a couple days on the compound to acclimate Charlo and educate the staff about her medical condition and needs. Very wise. I tried to give my girl space with the exception of meal times, but she gravitated to me complaining of stomach aches. I made her check her blood glucose, worried that her sugars might be high, but she was in range. I knew what was going on, she was anxious about me leaving and considering coming home with me. Damn T1d, it made me cry and furious. It’s unrelenting and cruel.

So her incredible counselor, Caitlin, and Molly, a mom volunteer extraordinaire, assured Charlo they would be her team. I fervently told her I knew she could handle the camp and her diabetes and that everyone feels weird when they first get to camp. She cried, “But, mom, I have something no-one else does. It’s harder.” She was right. Right to be worried, fearful, anxious. Right that her life will likely be harder than most of her peers. And always in jeopardy.

Ms. C mulled over her decision while riding horses that morning with the knowledge that we would support her no matter what. At lunch after Caitlin figured out her carbs and insulin dose, Charlo was relaxed and looking forward to staying – without me. I was jubilant.

Art-in-nature that Charlotte’s group created sums up my feelings about Ekone and the fabulous women who run it

I am in awe of the incredible Ekone women who were not only unintimidated with T1d and the rigors of its management, but enthusiastic and willing to learn and accomodate Charlo’s special needs. They are heroes and amazing role models.

As I headed out in my car, I saw Charlotte and Olivia clad in bathing suits by the enormous rope swing, animated and smiling. Charlotte was shaking her booty – a sure sign she was finally feeling herself and at ease.

‘I can curry and ride a horse with my ever-present and heavy T1d fanny pack!’ You rock, my girl!