A Personal Journey
Posted on by Jimmy Canton
After nearly three decades of working at Camp and serving children with serious illnesses and their courageous families, I recently experienced up close and personal the daily dread and fear that so many of our Camp families experience.
My son was diagnosed with type 1 diabetes when he was 13 months old. It’s a very rare diagnosis for a child under the age of 2. We learned a lot about the miraculous operation of the body in a very concentrated amount of time. How a non-diabetic body instantly monitors the amount of sugar in our body and commissions the commensurate amount of insulin production to handle whatever we consume in the form of food or drink. It’s miraculous, and something most of us take for granted every day. Without healthy beta cells to regulate blood sugar and release the proper insulin, there would be severe and potentially fatal complications.
If I take my eye off the ball, my son’s health will be in peril everyday – if not multiple times daily. Until there’s a cure, there’s no break from that vigilance and worry.
Our fear has softened over the year. We are more proficient at counting every carbohydrate that he drinks and eats and more confident that his daily trends to hypo or hyper glycemia can be re-directed with interventions of juice or additional insulin. Thankfully our son’s tolerance for shots (at least 5 a day) and blood sticks (10 a day) have never been an issue for him.
As someone who is familiar with the world of pediatric disease and the available support systems, I was surprised how raw and isolated I felt, and at times still feel. As far as I know, there is only one other family in the state of Connecticut that has a child my son’s age with T1 diabetes. I longed to know another family who could walk us through meals, skin problems, equipment, secrets for keeping sugars more level through the night, power foods that reduced volatility of sugars, etc. I desire to have a someone to call who is not just a good listener but who truly understands the specifics of my stress, anxiety and fatigue – to swap success stories and words of wisdom. I wish for the healing and comforting hand of a friend who parents a young child with TI diabetes.
Creating opportunities for fast friendships is what The Hole in the Wall Gang Camp does for hundreds of families with seriously ill children every year. Though diabetes is not among the chronic conditions served by Camp, my family and I will continue to draw strength and inspiration from the community that surrounds us. I am privileged to witness time and time again the coming together of kindred spirits who have been searching for one another. These friendships are powerful medicine and healing agents for families racked by anxiety and unanswered questions. It’s in the presence of these unique friends that one can be vulnerable in safety and laugh unabashedly. We are very fortunate to be receiving the level of medical care for our son at our nearby pediatric diabetes clinic. Having said that, I know very well the important role that the friendship of an affinity community can play in healing the heart and comforting the brain. It’s “a different kind of healing” that The Hole in the Wall Gang Camp provides throughout the year.