sweeten the trip

Type 1 diabetes made itself known to us while we were on a three week road trip back in 2006. N, our five year old son, started having some accidents at night just prior to our trip. My husband and I looked at each other and wondered aloud if it could be diabetes but put it right out of our minds. We were probably just worrying too much. I had worked with kidney dialysis patients (many of whom had type 1) as a social worker years earlier and my husband is a family practice doctor. We both knew the signs.

My mom joined us, we said goodbye to my husband and departed the next day with my three children in tow, ages 3, 5, and 8. N’s thirst and frequent urination became more apparent in the first few nights of the trip while staying with family. After an outpatient blood draw at a rural hospital in Iowa, we received the diagnosis. N had type 1 diabetes. This is in addition to celiac disease and Hashimoto’s thyroid disease (dx age 4), a life threatening peanut allergy (dx age 2) and reactive airways in infancy, later diagnosed as asthma. My husband had already been scheduled to fly out and join us later that day. We quickly had to decide whether to continue our trip or return home. After my husband consulted with our pediatrician and the pediatric endocrinologist, we decided to continue. He brought a glucometer and insulin, we made a stop at a pharmacy and we were on our way.

There were lots of tears all around. N cried when getting poked. In response, B (age 8) cried out: “Why would God do this?” I cried too. It was a shock to take in this new regimen. A week earlier, our “only” worry was whether his food was peanut-free and gluten-free. I was so grateful that my husband knew how to manage our new medical devices. I tried in vain to reach a dietician and finally received a little information about counting carbs. We didn’t have all the information that we needed (we’d get that upon our return), but somehow we all muddled through, checking N’s blood glucose prior to each meal and giving him his insulin.*

It was stressful and we were grieving. Yet we were also having fun! It sounds strange but these divergent states happened simultaneously. From a chuck wagon dinner in the Black Hills to climbing Rock City in Kansas to museum visits in Saint Louis, our itinerary kept us on the move and it was exactly what we needed. In the process, N’s routine normalized. I think if we had returned home, we would have been consumed with this crisis and that wouldn’t have been good for N. I have to say that it was a wonderful family vacation in spite of this new challenge.

N was handed a life changing disease on July 1st, 2006. This diagnosis and the meticulous regimen required rocked our world. It’s not easy. Lots of love, hugs and empathy are needed along this path as N manages daily life with type 1 diabetes. By continuing the trip and adapting to this new routine, we showed him — and ourselves — that life goes on.

*Disclaimer: Let me be clear. If you or someone you know finds themselves faced with a life changing diagnosis while on vacation, follow your doctor’s advice! If your medical doctor says you need to go home for medical treatment, then do it. By sharing this story, I am not endorsing our decision.

Two days after diagnosis in the Black Hills, SD. Lots of smiles with intermittent tears.

N , age 5, with big brother B (giving his silly face, inspired by a Calvin and Hobbes strip)