Courtesy of Val Emmich
- Val Emmich felt powerless when his elder daughter was diagnosed with type 1 diabetes.
- Shortly after, his younger daughter received the same diagnosis.
- This is Emmich's story, as told to Joelle Speranza.
This as-told-to essay is based on a conversation with Val Emmich. It has been edited for length and clarity.
I live in a constant state of fear. My daughters, 11-year-old Harper and 7-year-old Lennon, have Ttype 1 diabetes, a chronic condition in which the pancreas makes little or no insulin. If, for some reason, they didn't have access to insulin, they could die.
Nothing has made me feel as powerless as when my wife, Jill, and I learned of each girl's diagnosis.
How they were diagnosed with diabetes
Harper was diagnosed on December 23, 2020, when she was 9 years old. Our family was sledding with friends, and we realized that Harper's ski pants from the year before were sliding off her waist. Also, she kept having to take breaks from sledding to pee. Our friend mentioned that he had just attended a talk about type 1 diabetes and learned that peeing and weight loss were symptoms of the condition. This confirmed Jill's intuition that something was wrong. We had already noticed that Harper had an unquenchable thirst, drank a ton of water, and woke up in the middle of the night to use the bathroom. Because she is naturally thin, we didn't notice her weight loss until her ski pants were suddenly too big.
That next day, Jill took Harper straight to the doctor.
After examining Harper and running tests, the pediatrician took Jill aside and told her to bring Harper to the ER immediately. Because of COVID, only one parent was allowed in the hospital. I was stuck at home in a state of shock.
Jill and Harper stayed at the hospital overnight and arrived home close to midnight on Christmas Eve with boxes of medical supplies. The boxes covered our entire dinner table. Jill sat me down and relayed everything that she had been taught in the hospital. That's when it really hit me.
No more sleeping through the night. We'd have to wake up every few hours to check Harper's blood sugar. No more spontaneous snacks or meals. Everything had to be measured, weighed, and calculated. I had to learn how to use a needle and administer insulin.
I struggle with anxiety and depression, as well as codependency. In the weeks after Harper's diagnosis, I fell into a deep funk and was not very helpful. I felt paralyzed. I give Jill so much credit because she was as scared as I was, but she sprang into action. Without her, I don't know how we would have managed as a family.
Harper took her diagnosis surprisingly well at first, but eventually, it sunk in that she'd have to deal with this condition for the rest of her life. Many emotional breakdowns followed. That was probably the hardest part for Jill and me as parents: When she asked us why this had happened to her, we didn't have an answer.
This spring, we asked the pediatrician to pre-screen Lennon for type 1 since it runs in our family. When Jill called our endocrinologist with the results, they told her to immediately pick Lennon up from school and take her to the ER. Those numbers meant what we had feared — she, too, had type 1 diabetes.
It felt like we were back at square one. I was more devastated than I had been with Harper's diagnosis because now I knew what type 1 meant. It didn't seem possible to be able to raise two kids with this condition.
They help each other
Luckily, Harper really stepped up to the plate. She made sympathy cards for Lennon, helped with insulin-pump changes, blood-sugar testing, and carb counting. I think they both take a lot of comfort in the fact that someone close to them truly knows what they are going through.
Raising two young children with type 1 diabetes is overwhelming. Simple things become difficult.
It's hard to find a babysitter that can handle the demands. Because of that, Jill and I have less time to nurture our relationship. Also, sleepovers with friends are nearly impossible. We can't send our kids to spend the night somewhere and expect another kid's parents to care for them through the night. It destroys any sense of spontaneity. Before leaving the house, we must make sure everyone has their diabetes bag with all their supplies and that we have "low" snacks packed.
Once in a while, when Lennon can't have a dessert because her blood sugar is too high, or she can't have a sleepover, she wells up with tears and asks us if there will ever be a cure. All we can say is that we hope so.
Val Emmich is a writer, singer-songwriter, and actor. His book "Dear Evan Hansen: The Novel," was a New York Times bestseller.