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!

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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.