This journey has recently led me to hate food. I am considering just cutting it out all together. The whole thing is a hassle. Despite the primal necessity, food has become a complicated and insidious enemy. I hate thinking about, shopping for and preparing it - endlessly standing on line at Trader Joe's with a cart full of organic cereal and the deceptively named Simple Times beer. I hate carbohydrates with their sweet little dispositions bothering the pancreas to work so hard all the time. I am obliged to hate meat by marriage, with all it's cruel and carbon producing evil. Salt, fat, corn syrup - the list goes on and on. Sustenance has become bittersweet at best.
When Sam was diagnosed with diabetes, we made a decision not to limit his relatively healthy diet. The insulin pump really allowed him to eat anything as long as we diligently counted the carbohydrate content. Sam likes to eat. I would even say he
loves food. On our recent trip to Maine, we spent a few nights camping in Acadia National Park. Sam was beside himself about the fresh blueberry muffins that magically arrived at the "gathering place" each morning and the delicious whole wheat pancakes cooked by Dad on a camp stove. We ate popovers with strawberry butter with our friends after a big hike around Jordan Pond and peanut butter sandwiches on the summit of Great Head Trail. We even took the kids with us to The White Barn Inn - a very grown-up restaurant with a fixed four course menu. When we showed up there with two small children in tow people (rightfully) looked at us like we were crazy. While Talia ate only butter straight from the dish, 2 pieces of bread and a souffle that you pour chocolate sauce into (exclaiming "Mommy I have never seen something so delicious") Sam tried everything that came out. From veal carpaccio to parmigiano regiano mousse to avocado lime sorbet, and of course the dark chocolate truffles, he went for it all. More than the idea that he is willing to try things, I loved how he understood that this was a special experience and really embraced it. Sam is like that, always in the moment. After dinner, the four of us went swimming in a salt water pool under the moon and laughed about the incredible meal that went on forever. So many of our best experiences revolve around the comfort and pleasure of food.
Fast Forward One Week: Now back in New York, we are trying to get the 504 Forms (a.k.a. Diabetes Management Request for
Accomodation) approved by the Department of Health so Sam can begin school. With vacation fading into memory, we are banging through our extensive list of tasks just to keep our everyday life on track. A routine trip to the endocrinologist reveals that while Sam has grown several inches, he hasn't gained any weight in a year. The doctor suggests some bloodwork. I am so sure that nothing is wrong that I don't even ask what they are testing for. We already have "our thing." Later that week, Jon takes Sam for the blood draw. He sits on Jon's lap and Jon says ouch when they prick Sam, but Sam doesn't say a word. He gets a green band-aid and I don't think of it again.
A few days later, I am at lunch with a good friend of mine. It's a pretty nice day and I am drinking a hibiscus ice tea in the courtyard of a restaurant in the building where I lived when Sam was a baby. I am actually laughing when my phone rings. I don't recognize the number and when I pick up, our endocrinologist is on the line. He tells me that Sam has the antibodies for Celiac Disease and will need to have an endoscopy to confirm the diagnosis. This is likely the reason he isn't gaining weight. I am shocked. "No" I say, "Sam already has something. I don't wan't him to have anything else." I am shaking as I ask him questions while my friend, who can't hear what the doctor is saying looks on in a kind of sad silence. Nobody wants Sammy to have anything else. I hang up and cry for a minute and then I call Jon. To my surprise, he says, "I knew it. I knew he had this and I was waiting for this call." I am disgusted by the unfairness of this diagnosis and by the gluten-filled soba noodle soup in front of me. I hate the soup. I hate the soy sauce on the table -- soy sauce -- who would think that has gluten? I hate that my sweet, brave child has to manage something else.
If Sam didn't have diabetes Celiac wouldn't be that upsetting to me. I know lots of people that have this (10 percent of Type 1 Diabetics) including a friend who is a chef and instinctively I know we will figure it out. Still he doesn't need this. He doesn't need another thing to make him different or to limit his enjoyment of food and all the experiences that surround it.
At one point on that first day, I said to Jon "Can you f'#%@!in believe this?" and he responded that he feels like this is how it has always been -- and just like that it has.
Jon and I decided not to tell Sam until we could figure out how to do it correctly. By correctly I mean in a casual way that won't alarm or sadden him, but will give enough explanation. I feel as though we have been successful with the psychological aspect of managing Juvenile Diabetes and I don't want to chip away at his positive attitude and acceptance of that diagnosis. We also agreed immediately that the entire family will be gluten-free at home after the endoscopy.
Over the next few days, I started buying a few Gluten Free products to try them out and slowly introduce the change. My idea was that I could find a few things that Sam liked before we began to talk about it so I could say, "you can still have Gorilla Munch and Lara Bars." An opening for the conversation came a few days later when, we happened upon a gluten-free bakery in the East Village on our way from picking up our newborn Tamagatchi (If you don't know, it's an electronic vintage toy that requires constant care or it will die - and no, the irony is not lost on me). I bought a cookie and an exceedingly dense so called "chocolate halvah" and began a conversation with the proprietor about the bakery while Sam and Talia were playing with a stack of free
New York Spirit Magazines in the window. Sam turned around after a few minutes and asked, "What's Gluten?"
And so another new dialogue beyond his years begins.
A good friend and colleague recently lent me a book titled, “Breakthrough—Elizabeth Hughes, the Discovery of Insulin, and the Making of a Medical Miracle.” I’m only about 20 pages in to it, managing only a few pages a day as I ride the subway (and oddly holding the book up to show off its cover—subconsciously hoping that others will see and somehow understand why I’m reading this book). As its title connotes, this book chronicles the discovery of insulin as a treatment for type 1 diabetes. In 1919, diabetes was a terminal illness, with most patients surviving no longer than a year after diagnosis. A fascinating story awaits me, one that is deeply personal, as my son Sam is alive today only because of the incredible medical advances made less than 100 years ago.
