How Summer Camp Ultimately Failed My Child
And why we should’ve seen it coming
I remember the first time we left her there and drove off. It was the summer of 2011, she was nine years old and up until that moment, the longest she — call her L — had been out of our sight in the last eighteen months was one night at a friend’s house, and even on that occasion I drove over at two a.m. to check on her.
Unnecessary? Probably.
Sad? Maybe.
Over the top? Not hardly.
In 2009, L’s world was forever changed when she was diagnosed with Type One Diabetes, an incurable, chronic disease that if left to itself would kill her. To keep that danger at bay, treating it requires a level of meticulous care and effort that sometimes warrants a parent to get out of bed in the middle of the night, drive across town, wake another parent just in order to lay eyes on their own precious child to know that they haven’t stopped breathing in their sleep.
This is how I described it on the blog, Without Envy, which I created back then to help me process this new, mind-boggling life:
Here’s how it begins, our waking hours: Hugs, check blood sugar, plan meal, determine portions, count carbs, calculate insulin need, select site for injection, give shot, cry, comfort, then eat, fret, devour information on diabetes, fret more as we regurgitate the data we learned to one another, promise to focus on what we can do at the moment, and repeat.
So, you can imagine our trepidation at leaving her somewhere overnight for an entire week. But this was not just any place. It was diabetes camp, sponsored by the American Diabetes Association, which should have been enough to alleviate any worries on our part. And it did. For years.
Camaraderie, but at what cost?
She started attending the camp during her second year with Type One, where she got to be with other children with diabetes like herself and we got to be without it — sad as that sounds — for the first time since her diagnosis. It was, as I put it at the time: a “weeklong, must-do-ritual [that] was for us all terrifying, exhilarating, liberating, nerve-wracking and totally life-changing.”
By the end of it, all that togetherness had a tremendous psychological impact on our daughter’s development and her ability to take care of herself. She returned home each time a bit thinner and often having lost her voice from all the singing and yelling, but also with more confidence, more knowledge and wanting more independence. Her resilience and courage were truly inspiring.
Camp, however, was not our home. The food was not home food, the schedules were not home schedules. Even the treatment of her diabetes was not like that of our home. It was so very different and new and yet every year summer camp was exactly what we all needed as it provided friendships for her and much needed space for us. Not once in those nine years, did it ever cross my mind: There has to be some downside.
And then it came. And we all should’ve seen it coming.
Starvation is so last century.
They called me a few days after she got home… her ninth and last trip to camp (in that year, management of the camp had changed from the ADA to another diabetes organization, the Diabetes Family Connection, though the staff remained largely the same). She was eighteen and it was an audition of sorts toward her becoming a future camp counselor. The Director and Med Staff were concerned.
About what? I asked.
We think L may have an eating disorder, they said.
I asked why did they think that.
They said, She wasn’t eating.
I asked, When.
They said, Ever.
And then it hit me, the risk for one summer week every year for nine years of our kid’s early life in exchange for a little friendship and space: They do not know us. And they just barely know her.
On the surface, their worry was well intentioned. In the world of Type One Diabetes, not eating enough food, specifically carbohydrates, could lead to a low blood sugar. Or to put it another way, one of those moments in the world of a parent that will drive them from the bed. Not eating carbs was how they treated Type One a hundred years ago. But this was not a hundred years ago, this was now. So why was she choosing to starve herself?
Plain Lettuce Anyone?
Because not eating wasn’t her problem. The problem was the food they were serving. By food I mean heavily processed, and by heavily processed I mean stripped of most of their goodness. Think packaged, meals easy to make for a crowd. Think cheap, with some consideration given for nutrients, but come on, not really. Not by a long shot. Think of foods, which when consumed often and in sufficient quantity might lead to a diagnosis of…Diabetes (Type Two, which is different from Type One, but still, as equally dangerous and unwanted).
I told them as much.
They responded with the same suggestion they’d offered to L. Eat salad, they said.
I asked what kind of dressing they provided.
They answered, The usual kind.
Like Thousand Island? Ranch? Blue Cheese?
Yes.
What about plain old olive oil and vinegar?
They weren’t sure, but didn’t think that was one of the choices.
But that’s how she eats a salad. That’s how a lot of healthy people eat salad, especially those concerned with the amount of sugar in the food they consume.
They said, She didn’t have to use the dressing. It was just an option.
Really? How often do you eat plain leaves of iceberg lettuce?Really? How often do you eat plain leaves of iceberg lettuce?
Who Failed Whom
They took me through some other food choices: Granola Bars (loaded with sugar), PB&J on white bread (also loaded with sugar), Fish Sticks (don’t even get me started). The fact is, I told them, you’ve known L now for nine years, you should know that she comes from a family of healthy, natural food eaters. It’s part of our care plan for diabetes. Why wasn’t it part of theirs?
If their goal is to promote healthy, age-appropriate independence in diabetes management, shouldn’t they be acting more like a parent and not like just any old, run-of-the-mill summer camp?
We hung up without arriving at any resolution, so I did what any good father would do, I suggested my daughter reach out to them. She’s smart. She knows about food. She certainly loved being there, but the food was taking away from her experience. Perhaps they would appreciate her input and suggestions for providing a few other, healthier food options. She agreed and sent the director a message. In return, she got nothing. No response. Not a thank you. Not an apology. Not some funny cat meme indicating they’d made a huge mistake. Nothing. Not even the coveted counselor role for which she was auditioning.
So who was failing who? L, who rejected their food on the principle that it wasn’t real food and therefore not healthy, or the camp for not following through with its mission by not setting the example for their special-need campers regarding one of the most fundamental truisms in life: You are what you eat.
How is this not the mother of all goals at diabetes camp?
But even more importantly, how do you let the opportunity pass to engage with someone challenged in such a way by the human condition, someone you’ve supposedly mentored for so many years to flourish despite that challenge, someone young and courageous and interested in making a difference for others living within that same challenging space? How do you just leave them hanging?
Nine years is an awful long time to ultimately blow them off.
