Sunday, August 1, 2010

Camp Celiac....or, Dark Confessions of a Celiac Mom

Four days and counting. Four days and counting, till I drop two of my celiacs off at Camp Celiac. Four days and counting, till I entrust my children's health to the hands of strangers. Four days, till I relinquish control of the care and feeding of two of my girls, for 5 days. That's 15 meals, and 15 snacks. I know this, not just because I can do basic math, but also because I have been staring at the camp's menu for the last 2 weeks, trying to figure out how the most sensitive of my celiacs is going to negotiate meals with her 3 additional food intolerances. I am… a little bit… FREAKING OUT!
Allow me pause momentarily from my anxious panic, to provide you with a little background. Camp Celiac is one of the handful of camps in the United States that offers an entire gluten free menu, from a dedicated kitchen, to a camp full of kids with celiac disease. For kids who may never have been able to consider sleep away camp because of their illness, this is a amazing. For kids who have never met another child with celiac disease, this is wonderful. For a kid who is suffering from diminished self esteem because she wants nothing more in the world, than to be the same as her friends, this is.....a Godsend. I feel blessed that my kids have the opportunity to participated in such a camp.
I first learned of Camp Celiac, during the newly diagnosed days, when I spent every free moment surfing the internet educating myself about celiac disease and the gluten free diet. It is sponsored by the Celiac Sprue Association. At that time I only had one celiac, and she was four, so sleep away camp was not being considered, but I loved the idea of it. A special place where for a brief time every summer, these special kids come together. A place filled with other kids just like Beanie. A place where she wasn't the child with a mother hovering around her checking ingredients and packing special meals. A place for her to be just a kid. I tucked this thought away like a happy fluttering butterfly in my heart.…… fast forward 5 years.
This past school year, Beanie experienced unexplained symptom flare ups. This led us to more consultations with allergist, acupuncturist and nutritionists. As usual, all these appointment yielded much frustration and no fruition. Not long after I discovered that Beanie's ills, were self inflicted. A result of the social pressures of second grade pushing my competitive little extrovert into cheating on her diet, to maintain her social standing with her peers. No hazing, just an 8 year old too embarrassed to turn down a well meaning friend, who wanted to share a 'special secret snack time' on the bus. As if getting sick wasn't punishment enough, she had to endure being berated with guilt and pep talks, by her well meaning mother. The result of which was Beanie beating herself up for having failed us. Her health had a new companion on its slippery slope... self esteem. She started feeling that she would never be as good as other kids, because of her illness and food limitations. After ramming my head into the wall repeatedly, wearing my parenting hat, I finally decided to allow my professional-self a shot at our latest challenge. The clinical social worker in me assessed, and set out a treatment plan. More peer relationships with kids who had significant food issues was the most obvious intervention. So the plan for her to attend Camp Celiac was hatched.
I decided my older daughter who is entering middle school this coming year, could also benefit from a good dose of peer support, so I signed both girls up. It wasn't till later while filling out the paperwork that was due the beginning of July, that I found the proverbial fly in the ointment. A statement from the camp directors apologizing that this year they would be unable to accommodate any other food allergies at camp. Shit. I had seen the disclaimer on the website, but I figured the timing of the camp at the beginning of August would give her 3 weeks after camp for her immune system to recover, before school began.  So when I signed her up, and hoped for the best.
Three months later sitting at my kitchen table after dark, with a steaming cup of tea, I stared down at the pages of forms that needed to be completed for camp. Staring back at me was the question I could not longer avoid, "Does our child have any other food intolerances, allergies, or sensitivities? Well YES as a matter of fact…corn, soy and chocolate. Is that a problem? What do I do? Would the camp allow a 9 year girl, with multiple autoimmune food triggers attend the camp? The disclaimer was pretty clear that they could not accommodate kids with other allergies at camp this year. Would this become yet another normal life activity that she would be excluded from, because she isn't normal, even by celiac standards? Maybe I shouldn't disclose it? Or maybe, I should write a well thought out essay to enclose in the forms enumerating the importance of a child like Beanie, being included and valued.
What I chose, was more middle of the road. I filled out the forms honestly without fanfare, and waited for the possible fallout. The worst thing that could happen is that the camp directors would call me back and ask that she not attend camp. I think it was probably at this time, that my anxiety first began percolating inside me.
Not long after I sent in the forms, I was indeed contacted by one of the camp's directors. She sent me a very nice email to make sure I was aware of the disclaimer statement, and to inform me that there were other kids with multiple food issues who attend camp and bring appropriate foods to substitute. She would forward my information to the other director, whom in return would send me a copy of this years menu, for me to take a look at. Yes! Both my older girls would be heading to camp.
Fast forward another several weeks to find, yours truly, with a vice of anxiety, gripping my chest. This same anxiety has prevented me from sleeping well for the last month. Every childless moment I have, I am distracted, and avoided the task at hand, with past seasons of True Blood on demand. As the date for her camp adventure approaches, I can't escape feeling like a mother who is about to throw her child into deep waters, without full confidence in her ability to swim, with no way to get to her out if she goes under. It feels a lot like that.....a lot like that.
I have spent several hours, on several consecutive days, checking all the food on the menu, that the Camp director so generously emailed to me, several weeks ago. The task was so daunting and my anxiety so beyond it usual borders, that I avoided it for most of those weeks. Now with the drop off date for camp looming my maternal angst can barely be contained.
My brain keeps gently pointing out to my heart that most of these feeling are irrational. After my heart gives my brain a seriously dirty look, and a two finger point, it concedes that even with my best efforts to protect her, she will more than likely get sick. The only unknown is when.
I am being confronted with the most primitive of parental instincts. When a child is sick, you keep them close, and monitor them. To protect them, defend them. To heal them. Not send them far away to allow someone else to supervise their medical care---which is what food is for my daughter. There has been many tears and gnashing of teeth. Even, I am not proud to say, a fair amount of self pity, that my daughter isn't ONLY gluten free (oh how easy life would be…). Envious of others who can just pack their children for camp without analyzing every meal, morsel, and ingredient that may pass their lips.  Lament, that I am a mother who has to make a conscious choice, for my daughter to get sick to attend camp.

But, a choice it is…..and a choice that I am lucky to have. An exercise in faith. Faith in the events, and intentions, that led me to sign her up. Faith in the hours of research, and color coded spreadsheet menu that I sent to camp in triplicates. Faith in the camp directors, and their staff of volunteers, who did not politely ask my daughter to not attend, and are willing to make their best efforts to keep her healthy enough to finish a week of camp. Faith in my daughter, and her strength to recover from whatever assaults to her immune system this time at camp presents. Faith that this experience at Camp Celiac will provide her with the additional strength that she will need socially, and even if just for a little while she will get to feel like a regular kid.

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