Surviving the Diabetes Road Trip

Dominick-Domasky _FRONT COVER (2)_300pxThe following is an edited excerpt from the book Don’t Double Bread the Fish, a Tale of Failure, Persistence, and Finding Success:

I will never forget my son’s first preschool Halloween party. He decided to dress up as Darth Vader. The costume was a baggy black plastic get-up with a hard plastic mask. The mask only had a front with razor-sharp edges, and the back has a tight rubber band attached by the world’s weakest staple.

Cameron had been drinking an abnormal amount leading up to the Halloween party, and urinating often. He would wake up at night and drink a 32-ounce Gatorade, and then still want more. I remember wondering if he was really thirsty or just messing with me. Otherwise, he appeared healthy as an ox.

We sent him off wearing his mask and garbage bag-like costume. Later that day, we got a call from his preschool teacher; she said our son was sobbing uncontrollably. The teachers didn’t know what to do and asked us to come pick him up. My wife did so and called the pediatrician and described the recent symptoms. The pediatrician instructed her to get him to the local hospital for blood testing.

Our son’s pediatrician soon broke the news that our son had Type 1 diabetes and that we had to go to the Pittsburgh Children’s Hospital as fast as we could to meet with an endocrinologist. We loaded ourselves into the car for the long, scary trip.

My family have spent some of the hardest days of our lives in the Children’s Hospital, but those first few days were some of the roughest. We were in a fog, a state of disbelief. Every time I was alone I cried.

The visits have gotten easier since then, but certainly not easy. The hospital visits soon became not as overwhelming or as frequent. We settled into a routine where we were only traveling to Pittsburgh Children’s Hospital quarterly for scheduled testing, aside from the occasional diabetes emergency. The regiment for my son at these visits is as follows: his fingers are poked to draw blood, then his tiny arms are hooked up with rubber hoses for drawing more blood. After that his blood is tested, numerous other examinations are done, and the doctors poke at him more; repeat. Then fellows and med school students have their turn. Then they ask him questions and speak to him as if he’s an adult with any understanding of why this is happening to him.

Usually after the routine visits, my family and I will head for a feast. My son gets to pick the place, and to him there is no greater treat than “chicken on the bone.” This is “fried chicken” to the rest of the world.shutterstock_99051527_road_trip_300px

One gloomy January visit stands out in my memory. It hadn’t been the easiest visit. They had forgotten to call us for our appointment at the hospital, so we sat in the waiting room for hours. My daughter was two at the time and my son four; it took a lot of energy to keep them happy while we waited.

Finally, after the visit was done, we left Pittsburgh and headed towards our feast on the way home. We stopped at one of the nearby shopping strips to visit a restaurant that we thought Cameron would like. It was the Golden Corral, a buffet that was a good place for “chicken on the bone.”

I don’t know if the cold weather had gotten the best of the restaurant or what, but the vestibule was flooded. I’m not talking about some wet entrance mats; I’m talking about six inches of water. My wife and I were horrified, but Cameron thought it was great. He wanted to step in the puddles and make a splash. Amazingly, the restaurant stayed open, and we really didn’t have the energy to find another place.

Just as we paid for the buffet, the fire alarm started going off. Nobody moved. The manager assured everyone the alarm was because of the water in the lobby, and not a fire in the kitchen. It was ear-splitting, but Cameron wasn’t even phased. The kid ate like a champ. The alarm didn’t stop until we were putting our coats back on to leave.

A few days later, I was talking with Cameron about dinner plans, and I asked him what his favorite restaurant was. He said, “The place that plays the fire truck music.” Of all the pokes and prods of the day, the one memory that stands out for him is the awesomeness that we ate chicken on the bone while a fire alarm went off. Every day I learn a lot about resilience from my child, and about how to enjoy the little things in life.

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