We all have our diagnosis day story. Can you remember the exact moment you were told your child had type 1 diabetes? I remember the words with vivid accuracy, and I feel my gut clench every time I recall the day.
Our visit to the pediatrician’s office on that late afternoon in September three years ago was supposed to be for our kids’ annual flu shots. Before the shot was administered I mentioned a few recent concerns my husband and I had about our then 10-year-old son’s weight loss and increased thirst. In a matter of minutes, we had the diagnosis that would change our family’s life dramatically and permanently. There would be no flu shot for our son Jack that day. No sending him excitedly on his way that evening to his buddy’s birthday party. The gift for his pal would sit in my car for weeks. We headed straight to the hospital for three long, difficult days.
Upon hearing the phrase “type 1 diabetes,” I fell into my kind pediatrician’s arms in what felt like a tsunami of sadness and shock. I sobbed as I exclaimed, “NO, he can’t do this!”
“He’s stronger than you think,” she responded gently yet confidently.
She was right. Three years later, Jack seems to be doing fine, but I still find myself struggling with the burden of the thing. It’s not easy for me to admit this, but I think it’s important to do so.
There are many stories of children and adults brilliantly thriving with T1D. In fact, they fill our newsfeeds. They range from Supreme Court justices to triumphant professional athletes, celebrities, and wunderkinds who voraciously fund-raise for a cure. Most recently, we learned that British Prime Minister Theresa May was part of our T1D universe. When Jack was diagnosed, our well-meaning family and friends were quick to mention these folks, the ones I call the “shiny, happy people,” who seem to have all but conquered diabetes. The sentiment was if they could do it, we could too. No big deal, right?
Upon receiving the T1D diagnosis, you get a crash course in the hospital on how to care for your child. As soon as you are discharged, you have actual stuff to do — tons of tasks to successfully complete each day, without fail, after just a few days of training. I felt confused and utterly overwhelmed. In the initial weeks and months, diabetes was so top-of-mind that it felt like having a newborn at home all over again. People would call us up and say, “If anyone can do this, you guys can. You both are so smart.” It was nice to hear, but it didn’t make me feel better. It actually made me more nervous. Why do they think I know what I’m doing? If they really knew me, couldn’t they see how afraid I was?
I started relying on a strategy that had served me well in the past: fake it till you make it. I tried to act super competent and in control while I was frantically trying to learn everything I could. On day one at home, I proudly assembled Jack’s diabetes supplies in a beautiful, compartmentalized basket; syringes here, alcohol swabs there. The different compartments held lancets, ketone strips, carb-counting books, you name it. I had my binder full of medical information at the ready. I thought, “I’ve got this!”
But I was totally unprepared for the unpredictability of insulin dosing and blood sugar balancing, especially with a boy embarking upon the hormonal minefield of puberty. No one told me that there is sometimes no direct relationship between the work you put in and your results. Aren’t you always taught that hard work pays off? With type 1 diabetes, there are just so many factors, that’s not always the case.
Take our last endocrinologist visit. I could have sworn that Jack’s A1C had improved. We had been extremely vigilant, and I had done some fast calculations on recent blood sugars. I predicted the result would be a lower A1C—but I was wrong. It had gone up! I felt it in the pit of my stomach. After all of this work and attention, how could this happen?
Another time I had to call our insulin pump manufacturer to report a malfunction. The technical support representative asked me to read him every line of history the pump generated over the days leading up to the pump failure. A history of all the tinkering and maneuvering and button-pushing and brainpower required for me to be someone else’s pancreas. It read like a chapter out of Tolstoy.
When these events happen overnight, the fear becomes amplified. Jack was away at a sleepover party recently, and his continuous glucose monitor (CGM) alarmed in the middle of the night. Since we can see his levels in real time on our phones, I watched in horror as his numbers began a rapid downward trend, culminating with the piercing alarm and the dreaded word “LOW” on the screen. There in the dark I imagined the worst, and I felt as though my heart was bursting through my chest. Jack was eventually able to correct (actually, overcorrect) the low by devouring an entire king-size bag of candy. Still, I wouldn’t have been surprised if I’d gotten up the next morning to find I had a full head of grey hair.
Had any of those famous “shiny, happy people” thriving with diabetes had a night like that?
Stories of high-profile people with diabetes can be inspirational, but comparing ourselves to these role models can also make us question whether we’re doing enough: Am I keeping things in perspective? Am I giving my other child without diabetes enough attention? What about my relationship with my spouse?
The comparisons we make aren’t limited to T1D celebrities. There are the shiny, happy families we meet online or in real life, the folks who rarely tell you when they’ve had a rough time. On three separate occasions now, I’ve called parents whose children have been newly diagnosed with diabetes to say “how’s it going,” and they’ve told me that everything is “great.” How could it possibly be great? How do they sleep?
When we’re going through our own rough times, seeing how great “everyone else” is handling diabetes can sometimes just add to the anxiety. This feeling of failure, the disheartening truth that I can’t always control my son’s blood sugar despite my best efforts, has left me utterly bereft at times.
In the face of all the “uplifting” stories and social media feeds showing only the shiny, happy moments, we need to be able to share our inner demons. For me, it’s to my friend Tina, the wise mom of a vibrant and beautiful teenage daughter with type 1. She’s been at this for 11 years, and she’s got the wisdom of Yoda in my book. She doesn’t compete with anyone to have the most well-adjusted poster child for T1D, and her unabashed honesty gives me a reality check. Diabetes feels hard for a reason — because it is!
We all need people like this in our T1D community, people with whom we can come clean. I confess to her my fear of Jack going away to college and managing diabetes on his own. I contemplate the dangers of nighttime hypoglycemia while simultaneously worrying about the long-term complications of hyperglycemia. When I can talk and sometimes cry with someone who really understands, like Tina, she soothes my soul with her nonjudgmental listening, and we both come away feeling better and stronger.
My son will probably never become an international music star, a professional athlete, or my state’s top T1D cure fundraiser. He’s a regular guy and yet his own unique person. He’s a good student who works hard. He loves travel, Agatha Christie novels, dodgeball, and trampoline parks. When I asked him recently how he felt about his diabetes, he responded, “I’m all right.” He paused and then added, “But I hate it.” I was satisfied. It seemed to signal to me that he has it together.
I will never win the award for T1D mother of the year, and that’s okay. I will aspire to be great, but more often I will be good. As my favorite historical figure, Winston Churchill, said, “Enough is as good as a feast.” I will remain tenacious even after bad nights full of lows. I will take it as a mission to help others who are dealing with this challenge. And most of all, I will be honest about my struggle and let my vulnerability show. Maybe it’ll help both of us.
Disclaimer: The experiences and suggestions recounted in these articles are not intended as medical advice, and they are not necessarily the “typical” experiences of families with a child who has type 1 diabetes. These situations are unique to the families depicted. Families should check with their healthcare professionals regarding the treatment of type 1 diabetes and the frequency of blood glucose monitoring.