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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2 comments on “Anything but Normal, Thank You

  1. Liza, you and your family are brave but realistic in facing this daily. Charlotte can only feel empowered that you have let her go on two long-term excursions since her diagnosis. Devon’s friend who she has gone to YMCA camp with for 5 years has celiac disease. We bring Grace’s food each year to camp, and her mom and the director are in close contact before camp. It has taught Grace to be resilient, more independent, and it has taught Dev and the other campers about a chronic disease.

    I hope that Charlotte continues to have a wonderful camp experience this year, as you continue to learn about this life-changing condition. I think of you often, my friend and dear cousin. C

  2. Mousey Brown says:

    When my kids were very small, they went to a cooperative preschool run by all the parents. Once, one of the moms, Ingrid, told a story about her eldest daughter having to have an operation when she was less than a year old. She said that was the moment when she realized that “to be a parent, you have to be tough.” Tough enough to keep our hearts open, tough enough to let our children go through difficulty because we think they’ll be better off on the other side, tough enough to offer support and then let go. Liza, my dear, in the truest and most complimentary sense of this, you are one Tough Mother.

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