I almost lost our youngest daughter by ignoring my gut instinct, but I learned an important lesson.

Mother’s intuition, gut instinct, sixth sense—call it what you want, but everyone has experienced that sense that something isn’t quite right. When that feeling is about your child the instinct is even greater. The past year had seen my strong, fierce daughter shrink, both physically and emotionally. She was a pre-teen and should have been growing by leaps and bounds. She ate everything- fruit, cheese and peanut butter by the jar. Yet she was so thin she couldn’t keep her shorts up. Knees and elbows stuck out from her clothes and not in the awkward adorable way of gangly kids. Her cheeks, once so full her nickname was ‘chipmunk’ were now sunken. The dark circles under her eyes had a zombie like quality. Her competitive spirit never waned as she seemed to conserve her energy for softball games only to come home exhausted, needing a nap almost as soon as we made it into the house. Her appearance had even her siblings concerned as they came to me worried. I decided another trip to the pediatrician was in order.

The year before we had gone in for a well check-up for her. They took a routine urine test, which showed extremely high sugars in her urine. The doctor told us to do a 24 hour fast and she would rerun the test the next day. We did as ordered and the next day the test showed while her sugars were lower, they still weren’t normal. The pediatrician seemed satisfied. My gut didn’t believe her but not knowing what should have been done I accepted her decision. This was 1999. We had a home computer but searching the internet for (sometimes incorrect) answers wasn't a tool in my kit just then. I had my own suspicions about what was wrong with my daughter but very little to back them up. The next 12 months proved to me that my instincts had been correct.

This next visit to the doctor was decidedly worse than the year before. The pediatrician who saw us decided maybe our daughter was either anorexic or had Chrohn's disease. No tests were performed, no follow up visit scheduled. I knew then it was time for a new pediatrician. Now I was on a quest and I questioned every mom at the next softball game and discovered most of them went to the same doctor and spoke very highly of the entire staff. I made an appointment explaining to the receptionist she had just turned 13 and I wanted a routine check-up. I didn’t express any concern; I wanted to find out just how good this doctor was. They asked I bring a urine sample which- easy, since was drinking about a gallon of water a day and peeing quite a bit.

Five minutes into our first appointment with the new doctor, he walked in with deep lines of concern carved into his face. I knew immediately what he had found in her urine—sugar. He immediately sent us to the lab for blood work and three hours later he called with a diagnosis. Type 1 diabetes. He had made an appointment for us with the endocrinologist but it was Labor Day weekend so we had to wait over the holiday. I knew nothing about diabetes but at least we had an answer and a path forward. I was in for a few shocks.

By some stroke of odd, stupid luck she wasn’t immediately admitted to the hospital, at that time standard procedure. The 5 day stay was designed to help newly diagnosed patients have their sugars gently brought under control and teach parents what to expect and how to do the daily regiment of diabetes care. Instead, we had about an hour of frenzied instructions from blood testing to giving insulin shots. I panicked as I heard sugar ‘highs’ and ‘lows’ and the need to count carbs at every meal. We left the doctor’s office dazed as I clutched the folder with all the information crammed into it.

To be honest, I don’t know what I would have done without the endocrinologist nurse, Janet. She talked me through everything on the phone as we added another insulin to the syringe, worried about her carbs and faced the first body shaking sugar low. I owe a great deal to that woman and I tell her that every time I see her out and about. Even with Janet’s help, I faced the constant sense of being out of my depth, and I was—totally. Bit by bit I began to get the hang of it all. One resource that saved me many times was the website ChildrenWithDiabetes.com. It was a wealth of information with the added bonus of other parents facing the same situations. I needed and received practical everyday guidance on how to cope with the fears, frustrations and concerns of parenting a diabetic child. Simple things aren’t simple with diabetes—not all pizza is created equal for example.

She’s a grown woman now, married with two healthy children. There have been many highs and lows, both diabetic and regular life. From her illness I learned many important lessons: question doctors, ask for more information, don’t be afraid to rock the boat, trust your instincts as a parent. These lessons have served me well for 20 years.

#diabetes #family #Juvenile #Type1