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It's springtime and for most people this means spring cleaning or new romance. It holds another very special meaning for me and my family, however. It's the time of year I reserve a place for my family at diabetes camp. Five years ago, my son Joey, then two, was diagnosed with diabetes, and for the past three summers our family has been spending one week at diabetes camp.
Finding the Way to Camp
Although I am a great fan of the outdoors, I have historically drawn the line at camping for a week in the woods. I love to observe nature - from a nice walk in the woods or by the seashore, or on National Geographic specials seen from the comfort of my living room. But sleeping under a tarp in a rain storm is not my idea of a good time, so I have avoided camping. Before diabetes camp, I had a good thing going. But just as diabetes has changed so many other things in my life, it has also changed my ability to hide from Mother Nature.
After Joey's diagnosis I found myself looking for support - for myself and for Joey - as we faced the uncertain future of life with diabetes. We began to hear about diabetes camp in some of these support groups. Parents and children alike raved to us about how wonderful it was. They told us that in addition to the swimming, making crafts and campfire stories, diabetes camp fostered independence while providing a sense of security to stressed parents. Eventually, we brought home some brochures.
After looking them over, my husband and I discussed it and decided that we would try to find a week in the summer where we could all go to family camp as our son wasn't old enough to attend on his own. We sent in our check and went on with our lives, forgetting about our commitment . A few weeks later I received a confirmation of our deposit along with a list of items required for the trip, an application of financial assistance and directions to the camp. We were going to diabetes camp!
The Excitement Grows
In the course of the next few months I tried on several occasions to see if my son was still interested in going to camp. I secretly continued to hope that he might reconsider his week in the woods with the mosquitoes and the dirt. But contrary to my growing feelings of panic, Joey was getting more and more excited. He began to go through the list with me almost weekly looking for flashlights, bug repellent and other necessities of life in the woods.
Finally the day arrived that we packed our car with sleeping bags, bug spray and rain tarps. We live on the West Coast and it is a five hour drive through desert and mountains to reach our camp. Along the way we talked, sang songs, imagined bears and dreamed of starry nights. By now, my five-year-old's enthusiasm was beginning to spill over onto me, and I was looking forward to our week in the woods.
I must confess though that seeing my little boy excited about anything having to do with diabetes made me a little anxious. I have always been an advocate for the "cure" and have never allowed myself to consider the fact that my child may live with diabetes past the next five years. But on that road trip to diabetes camp I began the slow process of reconciliation with the dreaded disease and its place in my little boy's life.
The First Day
Driving into camp was a kid's dream. The first thing we encountered was a large meadow surrounded by redwoods. Children and parents were throwing balls in this beautiful meadow and baiting fishing hooks on the banks of a nearby stream. As we unloaded our car onto the sleeping deck, we introduced ourselves to the six other families at our campsite.
I looked around at the unfamiliar faces and realized that these families were already special to me as they understood what life with diabetes was like. They were not the physicians and medical staff that I usually related my life with diabetes to. They were brothers, sisters, dads and moms who, like me, had held their children down for shots, caressed their hand through a low and stayed up in the wee hours to test.
Learning On Line
One of the first organized activities we all did together was the shot line we had heard about in our support groups. A special bell was sounded before the dinner bell and all the children and families began walking down the hill to the central meeting area. I soon found myself standing on line to give my son a shot. Until that moment diabetes had been a relatively private matter that we handled in our home. I keep everything well stocked and well organized in an effort to keep some sanity around an activity that can sometimes be emotional and unnerving. Standing on a long line waiting to tell some stranger about this intimate activity was somewhat unnerving. But as I stood there and spoke to the other parents I began to see the multiple benefits of the activity.
Diabetes carries with it an enormous amount of emotional baggage. Parents with little or no medical training are given the necessary education upon diagnosis to keep their child alive. Often this education does not include the time required to assimilate and comprehend the enormous changes required to keep a child with diabetes not only alive but thriving.
In the shot line I saw parents and children interacting in new ways. Each of us got an eyeful and an earful in that fifteen minute wait. We learned from each other as well as from the camping staff. We talked not only about dosages and routines but also about child rearing and coping. It was an opportunity for each of us to try out something new and to learn from others in a safe and compassionate environment.
Mealtime was also a shock to my way of doing things. Giving up the control of what and how much my son would eat for every meal was sometimes a relief and sometimes a terror. Much to my amazement, I saw my son beginning to choose food for himself based on his own sense of his dietary needs. In addition, each meal was prepared with diabetes in mind and counselors were always available to answer carbohydrate questions.
The first day at camp ended with a welcome campfire, and as I dressed my children for the cool night and mosquitoes I felt myself beginning to warm to camp. I sensed a genuine sense of camaraderie among the staff and the teenage counselors with diabetes. We all sang songs around the campfire, most of which were about families and diabetes humor. My son laughed at things I thought were not ever going to be laughable, and I began to see that he needed to be in this place.
My other children also loved the atmosphere at camp and were already making friends from their own age groups, some with diabetes and some without. My daughter, seven years older than Joey, made friends with a girl her own age with diabetes and I saw her level of compassion rise measurably over the course of the week. The things that made her angry and resentful of her brother suddenly became catalysts for friendship. Her "friend" had lows and her "friend" took tests. My daughter took some tests and even a shot just to be part of the group.
My littlest child was only two at the time, and his experience was one of playtime with the other little ones. But even in this nursery school environment there was diabetes. One of the smaller ones had a severe insulin reaction and the camp moved through this normally traumatic experience with a calm, reassuring sense of prepared urgency. For a parent of a toddler with diabetes , beginning to "practice" life with diabetes in this kind of environment can be an invaluable experience. Seeing the effects of glucagon or the quick recovery a child makes from an insulin reaction properly treated can alleviate fears and uncertainties and bring a sense of peace and order to an otherwise chaotic world.
Helping the Parents
The daily education sessions are one of the most important aspects of diabetes camp for the parents. Both introductory and more advanced management classes were prepared by the staff. We discussed sick day management, adolescent issues, promising research and a host of other relevant material.
One of the most valuable sessions was an evening program led by teenage and young adult counselors with diabetes. Listening to them speak of their life with diabetes was like having a conversation with Joey in the future. I have often felt despair at not really knowing what he is feeling about his life. Does he understand what is happening? How much does he understand? When will he begin to know about the things I worry about? What will his reaction be?
Everything the counselors said was valuable, and I will carry their suggestions with me for years to come. One in particular was extremely poignant to me. One counselor talked about getting a day off every month from his diabetes. Even when he was an older teenager his mother would take over the task of diabetes for one day. For one day he would not think about tests or shots or lows - he could be free from the enormous burden of his disease. I will always remember this advice, and if the time comes when Joey needs this, I will be there to provide it for him.
The rest of the week included the usual camp activities of crafts and sports, dancing in the mess hall, hikes and swimming. The final evening campfire was a fitting close to a full week. Children sat together with their new friends singing songs while parents gave thanks for the week's lessons and fun.
For my part, I was thankful that diabetes camp provided a world where I can begin to deal with the tough questions diabetes brings to my life in a safe, loving environment occupied with people who understand my efforts and pain in a way few people can. But more importantly, diabetes camp brings something very special to my son.
"Do You Want to Go This Year?"
When it came time to sign up for our second year I wondered if there could be anything new to learn or experience. When I asked Joey if he wanted to go, he said "Yes!" without hesitation so I signed us up again, but this time without siblings.
On the first day of the next year's camp I saw in one simple moment what diabetes camp means to Joey. We had just unpacked our things and were sitting in the meadow. Camp has a little store where the children can buy sugar-free drinks and popsicles as well as T-shirts and flashlights. Joey had just finished his first popsicle and turned to me and said, "Mom, can I have another one?"
"Sure, Joe, they're sugar free," I said.
He looked up at me with those big blue eyes and as he danced up the hill he shouted, "That's right! It's diabetes camp!"
At that moment I understood that for Joey most of the world is a foreign place. He must always ask and check to make sure that the food he eats or the exercise he does will not hurt him. But for one week a year, his world is normal and he is not a foreigner. For one week a year there is diabetes camp where someone has gone ahead and prepared life as it should be just for Joey and other kids like him.
I will not always be at camp as Joey is growing up, and he will soon attend without me. I also won't always be there in Joey's life as he is growing up. Eventually, he will leave home to live life as an adult and start his own family.
I am just so grateful that there is a place where Joey can go now where he feels safe and is free to just be a little boy as he learns to live with his diabetes. I pray daily that there will be a cure for Joey and that he will not have to live all his life with diabetes. But even as I work for this cure, I work to prepare him for life no matter what the future holds. This preparation includes diabetes camp, and both Joey and I thank God that such a place exists.
0 comments - Jun 1, 1998