The Difficulties of Growing Up With Type 1 Diabetes

The Cost of Type 1 Diabetes
The Cost Of Raising a Child With Type 1 Diabetes
November 10, 2017
growing up with type 1 diabetes

I never realized how much American culture included food and treats until my own son was diagnosed with type 1 Diabetes. At first, we thought he was having a growth spurt -thirsty all the time, eating bread like there was no tomorrow. When the bed wetting started, we became concerned. As much as my son was eating and drinking, he was losing weight. Our pediatrician diagnosed him with Type 1 Diabetes – juvenile onset diabetes. Unlike Type 2 diabetes, my son didn’t develop insulin resistance from a poor diet. He was just born that way.

growing up with type 1 diabetesWe had to learn very quickly how to help our son monitor the glucose in his blood. Blood sugar too low, he could faint; too high, and he would suffer pain and cramps. Even with a balanced diet, low in white sugar and simple carbohydrates, he still needed to give himself insulin that his body could no longer produce. We practiced on oranges, then along with our pediatric nurse, taught him to inject himself with insulin at mealtimes.

We thought the daily shots and finger pricks to check his blood sugar levels would be the most difficult part to live with, but restricting treats was almost as hard. When we trick-or-treat, we look for houses with teal pumpkins – they offer non-food treats for children with diabetes and food allergies. When a classmate celebrates a birthday with cupcakes for the class, we ask his teacher to give him a small piece of sugar-free candy that we have provided. It’s hard for a little boy to watch his friends gobble cake and cookies, and hard when he visits the nurse during recess for his blood sugar checks and insulin injections. As a parent, I’ve had to learn food substitutions, as well as the best combination of macronutrients in each meal so that his blood sugar levels don’t accidentally spike too high. We try to keep him as balanced as possible, but it’s difficult.

We understood that our family would need to make changes for our son, but no one told us about how expensive diabetes supplies are. Our insurance only covers so much, and things like specialized testing strips for his blood sugar meter, alcohol wipes for each injection site, and bags of clean needles, as well as special bins for their disposal, add up quickly. When we have to remind our son “no” when we walk past a candy store, or a waitress in a restaurant asks if he’d like a lemonade, it’s hard to see his face fall. When our family budget has to stretch to accommodate medical supplies, and there isn’t much leftover, it becomes even harder to tell him that we just can’t afford much for Christmas.

If I could take my son’s disease from him, I would. I worry about being able to afford testing supplies and insulin as health care rises and the gap between what our insurance covers and what is left for us to pay increases. When our pediatrician suggested we contact Help a Diabetic Child, I nearly wept from the generosity of strangers, helping our family to defray the cost of expensive testing supplies and insulin. Gratitude is such a small world for an organization that has helped our family so much. Living with Type 1 diabetes as a child is hard – worrying about whether he will have the insulin and supplies he needs shouldn’t have to be.