Summer Camp: Carb Counting, Inspiration, and a Special Torch

by james s. hirsch

I didn't quite understand the torch.

In August, our family attended the Clara Barton Family Camp in Oxford, Mass. During the rest of the summer, the camp is for girls with diabetes. Camp Joslin for boys is a 10-minute drive away - but for five days in August, across 200 acres of woodlands, hiking trails, and playing fields, Clara Barton is the site for entire families to share bunks, count carbs, have a few laughs, and dry a few tears.

About 30 families attended this summer, each typically with a diabetic child who is either too young or not quite ready for a diabetic sleep-away camp. (Many siblings attended as well.) Our son, Garrett, who was diagnosed three years ago, is now 6, so next year, he'll be old enough for Camp Joslin. But as I said, I wasn't sure about the torch. The camp has a gift shop, and Garrett bought a string necklace with a nickel-sized pewter ornament. On one side it said: "Barton 1932," a lovely reminder of the camp's opening year. Engraved on the other side was a torch, with five tiny stars billowing out like smoke.

Did the torch symbolize how the camp is trying to blaze a trail for better care? Or to be a bright light for children with diabetes? Or was it a signal of our strength and vibrancy to everyone around us? Or was the flaming icon suppose to connect generations of patients who at this very camp - and beyond - have passed the torch of empathy, friendship, and love?

I suspect Garrett just thought the fire was cool.

Regardless, we didn't have to worry about Garrett fitting in or having fun. He became fast friends with two high-spirited brothers, ages 4 and 6, who shared our cabin - on our first afternoon, the 4-year-old asked Garrett, "Will you be my best friend?" - and they were soon planning post-camp play dates. Which was fine, except we live in the Boston area; and they, in Los Angeles.

Each cabin was assigned a nurse, who registered the families when they arrived. Our nurse, a stout woman with short-blond hair, came all the way from Texas.

Nurse: "My name is Dorothy, but everyone calls me Bubbles." Sheryl (my wife): "Can I call you Dorothy?" Sheryl is a loving woman, but she doesn't forge intimate bonds with anyone whose name evokes soap suds. Garrett had no such reservations. By the end of the first day, he was running around the cabin, squealing, "I want to blow Bubbles! I want to blow Bubbles!"

Camps have a special place in the history of diabetes. The American Diabetes Association now accredits 122 of them, and I don't know of any other childhood disease in which these "hospitals in the woods" - as they were first called - play such an important role. While the founder of the first camp, Dr. Elliott Joslin, was a visionary, I doubt that even he foresaw what he was bequeathing.

After insulin was discovered in 1922, Joslin recognized the value in bringing together diabetic children in a camp setting where they could have fun but also learn the basics of diabetic self-management. While Joslin practiced in Boston, he was raised about 55 miles west, in Oxford, and his eponymous camp was founded nearby in 1927. In addition to medical staff and counselors, it had a laboratory with chemists who tested campers' urine samples for sugar. In 1932, Joslin joined with the Universalist women to create a camp for diabetic girls, located on the grounds where the late Clara Barton was born. Barton, herself a Universalist, had been a pioneering nurse and teacher best remembered for founding the American Red Cross.

One can only imagine the experiences of those diabetic campers so many decades ago. Nowadays, a family with a newly diagnosed child can be instantly connected, through the Internet, to hundreds if not thousands of families going through the same experience. Chat rooms, support groups, blogs - dare I say, even diaTribe - create a genuine community.

But 20 years ago, let alone 75, a diabetic child was much more likely to feel isolated, detached, and alone. Except at camp, where all the things that made the child feel different were suddenly the norm. Actually, I don't need to imagine what those children experienced long ago, because I experienced it myself when, in high school and college, I was a counselor at a diabetic camp in Missouri. In a poignant but typical story, a fellow counselor told me how she had arrived at camp late, and when she drove up, she looked down from a slight hill and saw the entire operation - more than 100 kids - gathered around, talking, laughing, carrying on. A long table stood with insulin vials, syringes, and alcohol swabs; and everyone was getting ready to draw up their doses and give their injections. It was all so . . . normal.

My friend told me how for the first time in her life, she was no longer the outsider. So there was only one thing left to do. She wept. As I discovered at Clara Barton this summer, camp has changed a lot since then, just as diabetes has. When I was a counselor, everyone was on the same number of shots (two) and mostly the same insulins (Eli Lilly's NPH and Regular), and we counselors, ready to save the world, would walk around with our clipboards, holding medical sheets with urine test numbers and a plastic bag with sugar packs for lows.

At Clara Barton, the therapies were as different as the kids, who, collectively, had four different types of insulin pumps, at least that many daily injection routines, and God knows how many diets. The counselors were now walking apothecaries, hauling glucose meters, glucose strips, alcohol swabs, tiny lancets, and glucose tabs.

The Family Camp cost $250 per person, plus a $50 registration fee. The facilities couldn't have been nicer, with modern log cabins and dining hall, swimming pool, well-groomed playing fields, a barn-like theater hall, a conference room, and offices. During the day, the kids had their own activities - sports, swimming, arts and crafts, instruction on health and diet - and even the siblings had special sessions to discuss having a diabetic brother or sister; Garrett's older sister, Amanda, was one of the attendees. The parents also had break-out sessions. Some were more useful than others. We had, for example, a very good social worker who allowed us to vent our frustrations and who encouraged us to build a support network at home.

On another occasion, we had a session for yoga. I thought they said "yogurt" so I got there early. The woman kept telling me to relax, but all I could think about were my emails. Disaster.

Being with so many others and living in such close quarters - there were 15 of us in our cabin, including three counselors - made us appreciate how smart and resourceful other families are. For example, one night at midnight, a girl in our bunk who was on the pump had a blood sugar of about 80 ml/dL - which is a bit risky while sleeping. I thought the parents would try to give her a snack. Instead, they suspended her basal insulin for an hour, slightly raising her bloodsugar without disturbing her sleep. Brilliant. We now do that for Garrett.

Some ideas were less practical. At one session, a woman with a diabetic daughter spoke to us about her very structured approach on running her household. Using Velcro, she attaches the carb count on every item of food in the kitchen - a depressing thought for those of us who barely have time to put the food away, let alone tally the carbs. But we gave the Velcro woman a lot of credit for her vigor.

The camp director asked the parents to stay on the camp grounds, but I will say that five days, on camp grounds, can be a long time. By the third day, I was conspiring with another father, a house painter from Connecticut, to make a jail break for coffee at Dunkin' Donuts.

Some speakers tried to convey how much diabetes care has improved over the years, but the parents, in describing their own fears and heartbreak, made clear how far we have to go. One mother said her child was rejected from a private school because of diabetes. Another mother said her daughter once called 911 to ask for another mommy, because her mommy "was giving her too many shots." A father recounted how his young son asked, "Who will take care of me if you're not here?"

Another mother said her son is going to help run a lemonade stand so he can find a "curse" for diabetes, so he can eat more carbs.

But encouragement came from the diabetic counselors, some of whom spoke to us one night in a break-out session. They talked about their struggles with parents, school, and the entire balancing act of being a young adult and having diabetes. But they've all persevered, and they all discussed the indispensable role of camp - "a kick in the pants," one counselor said, in forcing her to take responsibility for her own health

Camps push you to your limit - "adventure programs" include hiking to the top of Mount Washington in New Hampshire, 6,200 feet above sea level - and create enduring friendships. They also cast a completely different light on a daily struggle. The great thing about camp, one counselor noted, is that "diabetes doesn't even exist here."

Said another counselor: "I love diabetes, because it's made me who I am. If there was a cure, I wouldn't want it." In college, she wants to major in "recreational service so I can come to camp forever."

For all that camp may have changed over the years, the essentials remain the same. It's about kids having fun - raising the flag each morning, playing games during the day, singing at the camp fire at night - and being with other kids just like them. One boy told his mother that he liked camp because for the first time, he didn't have to pull his shirt down over his insulin pump.

The highlight, for Garrett, was attempting the "zip line," in which you strap a harness around your waist, climb 50 feet up a tree, stand on a platform, attach yourself to a cable that stretches between two trees, leap, and hang on as you zip down the line. You can't really hurt yourself because you're attached to a rope held by a counselor on the ground. Still, it's difficult to climb the tree (you put your hands and feet on metal rods nailed across the trunk), it's not easy pulling yourself onto the platform, and ultimately it requires a literal leap of faith.

Could a little kid like Garrett do it? He pushed on an orange helmet, buckled in, and began his ascent up the tree, taking each step methodically but confidently. He hoisted himself onto the platform, connected himself to the cable, and with his buddies on the ground cheering him on, he jumped as far as he could.

The torch, of course, signifies everything - those who carry it are the trail blazers of a poorly understood disease, they're our beacons of inspiration and courage, and they are the anonymous children who pass the flame of hope to future generations.

This I knew as Garrett sailed down the zip line. And just to show off, he inverted his 47-pound body so his toes were pointing toward the heavens. He was back on the ground soon enough, buoyant and fearless, still wearing his torch, heading into the woods at Clara Barton Camp, in search of a wonderful new path.