Our world turned upside down last March when emergency room doctors diagnosed our 5-year-old son Casey with Type 1 diabetes. I was grateful that Type 1 is treatable, but I grieved losing the life we knew and the one Casey would have had. I was also utterly overwhelmed by the daunting task of having to think and act like a pancreas on Casey’s behalf. So, how has the last year gone for us? What did we learn?
The first thing I learned was how astoundingly ignorant I had been about what it takes to live with and manage Type 1 diabetes. I knew that our close family friend of 35 years has Type 1 diabetes. But I had no clue what it actually demanded of him day after day, year after year—let alone what it demands of parents of children with Type 1. Yet, here we were, thrown suddenly into the thick of it, knowing little but fearing much. Thank goodness for the guidance offered by fellow Type 1 parents whose own situation I had never fathomed. They were generous. They understood.
Type 1 diabetes is a particularly difficult chronic disease for individuals and families to manage well. We came home from the hospital with some good training, but not nearly enough. Once home, I was hit with just how complicated and confusing the job is, certainly for a novice. It requires us to do what Casey’s pancreas no longer can, which is to keep his blood glucose from plunging dangerously low or spiking to health-damaging highs. Yes, that requires counting carbs and administering insulin, but these are just baby steps in learning how to think like a pancreas. We must closely monitor how much glucose is circulating through his body, regulate his carbohydrate intake (which digestion turns into glucose) and inject carefully calibrated amounts of insulin periodically throughout the day, and sometimes the night too. It has taken much time, effort, trial-and-error and hard experience to reduce the frequency and severity of Casey’s highs and lows, as well as to develop with him a workable regimen for what, how much and when he can eat. We don’t deny him any foods, but he can’t graze during the day and we have learned some foods impact blood sugar levels more severely than others.
While we have learned more about the right ways to manage Casey’s diabetes, we still worry a lot about making mistakes and even knowing what is right. Casey’s blood glucose levels often seem erratic, with unexplainable lows and highs. “What did we do wrong?” I now know that many unmeasurable circumstances can cause spikes or plunges, but that hasn’t eased my guilt and self-doubt. The anxiety can be as physically and emotionally draining as the job itself.
I have also learned, as parents before me have, that Type 1 requires constant problem solving and that not all problems have clear solutions. Sometimes there are just no answers. You have to listen to your gut instincts when things don’t seem right. We’ve faced some pretty scary scenarios but came out of them OK. We’ve all made mistakes, but learned from them. We have also had to battle insurance problems because coverage of a medicine is suddenly changed, equipment needed for pediatric cases is denied, or the care team we use is declared out-of-network. Still, we’ve found ways to manage and roll with the punches.
Managing Casey’s condition still requires constant vigilance. Alarms still go off day and night alerting us that his blood glucose is too high or too low; that we need to act immediately to correct it. We have to constantly think about how food, physical activity and illness might affect his blood sugar, but realize we may never have sufficient information to accurately predict their effects.
I remember imploring my fellow Type 1 families to tell me when I would feel “OK” managing this disease. They wisely made no promises, but indicated a year’s time might bring a sense of familiarity. A year seemed to me a good benchmark, so I set my sights on that. I hoped that at one year, I would have gained the expertise to manage Casey’s Type 1 with some confidence. Having reached the one-year mark, I can say that I do, in fact, know a lot more now. But I have also become more keenly aware of what I still need to learn, much of which, I suspect, will require more years of experience.
Managing Type 1 will never be easy, but some things have made it easier. If nothing else, it has become more routine, bumps and all. A year in, we have a strong support system, which now includes top-notch diabetes nurses and educators. We have learned essential techniques, such as estimating the carbohydrate content of meals and snacks and using mathematical formulas to dose and modify insulin amounts as necessary. Better understanding the mechanics of the disease itself is helping us to identify foods and circumstances that will have the biggest effects (and when) on Casey’s blood sugar levels and, more importantly, to anticipate and prevent likely problems. It also helped that Casey immediately learned to count carbs, test his own blood sugar and report when he feels it falling too low.
We are lucky to be living at a time of great advances in equipment for testing, monitoring and controlling blood glucose. Casey started out testing his blood sugar with one of the quick and easy glucose meters, all of which were far in the future when our friend was diagnosed. Even better, Casey is now using a Dexcom continuous glucose monitor (CGM) that, being attached to the body, transmits blood glucose readings every five minutes with no fingerstick required. We hope Casey will soon get another piece of equipment that friends with Type 1 say has transformed their lives—an insulin pump. Insulin pumps deliver frequent pre-programmed small doses of insulin directly to the body. Communicating with the CGM, they act a lot like an artificial pancreas, but require human input and monitoring to do so. Casey’s pump will require some intense training, but it should help Casey live a more normal, long and healthy life.
When Casey was diagnosed, I felt powerless. I no longer do. It is not because I have mastered diabetes, which I clearly haven’t, but because I have learned how to make a difference. I realized if I hadn’t understood the daily reality of a close friend, how could I expect anyone else to understand the relentless demands of Type 1 unless they themselves were living with it? With that realization, I felt a fire inside to make a difference for people with diabetes. I wanted to help spread greater awareness of this difficult chronic disease and support people who must navigate it.
Several months into our own family’s journey with Type 1, I began writing articles for the local newspaper describing it. This is my sixth article thus far. In the fall we organized a fundraiser with Casey at the lead to support the Juvenile Diabetes Research Foundation’s (JDRF) work in advancing diabetes treatments. Then my husband Sam did a podcast with me and another Type 1 mother on life caring for a child with diabetes.
Our JDRF Walk for Diabetes changed Casey’s outlook on having diabetes. He is also now the proud recipient of a JDRF “Rookie of the Year” award in recognition of our advocacy in his first year. My first newspaper article, our walk and our podcast have also been shared on the JDRF Greater Delaware Valley Facebook page. My first four articles, plus our podcast, were cited in a research article on diabetes management published in an international journal last December.
The future is also bright with opportunities to support and advocate for families with Type 1. We are currently working with the Lions Club in Hammonton planning another fundraiser for JDRF in April. I have an appointment to speak on a well-known diabetes podcast in May. And JDRF representatives have asked me to write a letter to newly diagnosed families to be distributed over the summer, sharing our story and discussing the importance of JDRF and advocacy.
But most gratifying have been the responses of fellow Type 1 parents to my articles. They are so grateful. They feel understood and heard. They recognize themselves in the difficulties, crises and fears we have faced. They don’t feel alone. They learn from and share my articles. They ask for advice. For me, they have confirmed that there is no greater gift than giving to others. Advocating for people with diabetes has helped me channel my grief into something beautiful, whether it be empowering my son, helping fund research for a cure, helping Type 1 families express their realities to others or lessening another mother’s distress.
When I saw how grateful people were for our advocacy and how it changed Casey’s outlook on diabetes, I started thinking differently about our difficult first year with diabetes. We have survived some really scary diabetes experiences and know full well there will be others. But we reached my first-year benchmark of “doing OK” and I expect our second year to end better than just “OK.”
Those of you just starting your first year with Type 1 or another difficult chronic disease are probably anxiously asking yourselves, as I did, “Will we be OK?” Although managing a chronic disease is a challenging job, one year is enough time to learn a lot, find helpers and make a meaningful difference. And there is no better time to start than now. Best wishes.
Lisa Seitles
Hammonton
Lisa Seitles and her husband Sam are the owners of READ Preschool and Camp Tuscaloosa. They have four children and are active members of the community.