My son was born in 1971, a beautiful, happy, healthy baby. His sister was born in 1974. In 1975, shortly after his fourth birthday, my son began to lose weight, wet the bed, and he developed an unquenchable thirst. We took him to the emergency room of the hospital late one night, and we were told that he was a juvenile onset diabetic. He was admitted, and we learned to give shots of insulin into an orange first, and then to our little boy. When we brought him home, my mother in law expressed guilt because as an adult onset diabetic, she felt she was responsible for her grandson’s diabetes. At that point my mother informed me that her cousin was a juvenile onset diabetic since the age of three. So I was then able to tell my mother in law that it was not her fault that my child was now diabetic, and I could now bear the blame. At one point I told myself that I wished it was me with the diabetes instead of him. I subsequently developed type 1 diabetes when he was 17.
Raising a diabetic child in the 1970’s and 1980’s was a real challenge. Blood sugar testing was nonexistent, and we checked his urine to see how his control was. He was on one shot of insulin a day. We mixed his NPH and regular insulin in the syringe in the morning, and he was on a fairly strict schedule of meals and snacks to coincide with the action of the insulin. We tried to explain to our young daughter why her brother couldn’t eat sugar, but something got lost in the translation. She had a recurring nightmare that her brother would eat sugar and explode. And she felt responsible for this nightmare, because she wasn’t watching her brother carefully enough.
There has been a theory that type 1 diabetes may be caused by mothers giving their babies milk before they are six months old. I’m pretty sure I put milk in his bottle before he was six months old. Oh great.
On July 2, 1999 my son was living and working in New York City, seeking work in the theatre, his passion. One day he stopped to buy a sandwich and was on his way to the subway, where he planned to eat the sandwich. He awoke in Bellevue Hospital with a broken left leg after suffering a hypoglycemic episode. He thinks he was hit by a taxi, but there were no witnesses available when the ambulance arrived. We drove 4 1/2 hours to the hospital, picked him up and brought him back to our home to recover. My husband took him to PT three times a week, and a couple of months later he had surgery again on his leg. When he recovered we returned him to his apartment in Queens. A couple of years later he developed proliferative retinopathy and needed laser surgery, which continues to this day. He had to give up his dream of acting and get a job with health insurance benefits to pay for his laser treatments. Within a month of his accident, my mother had a debilitating stroke which left her paralyzed on her right side. My son told me last week that he was responsible for her stroke because of the stress she suffered when he broke his leg. I did my best to inform him that a stroke is not caused by stress, but by high blood pressure and/or a blood clot. So he lived with guilt for 14 years that was not his doing.
Diabetes is a full time job. It’s not our fault that we developed diabetes. We need to learn to deal with the day to day existence of living with it, and let go of the guilt we associate with it.
Sue, thanks for writing this post. I never thought about diabetes guilt being multi-generational.
He surprised me with his comment about his grandmother. I had no idea he felt that way. It goes to show the guilt door swings both ways.
Pingback: Life Hacks for Diabetes (and Blogging) | Test Guess and Go
Pingback: Musings On Being the Parent of an Adult Type 1 Diabetic | Test Guess and Go