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I squeeze my eyes shut to keep tears from falling. I’m in the living room and don’t want my children to witness my distress. I’ve been battling with my 8-year-old son Casey’s type 1 diabetes (T1) for almost three years now. Today, I’m feeling overwhelmed; defeated by its unpredictability; exhausted by its demands.
A diabetes doctor, himself having T1 since age 5, recently described the mental toll that T1 takes: “Picture a roulette wheel where the options are frustration, exhaustion, guilt, shame, anger, anxiety and burnout” (Brian Ulmer, MD, 12/02/2023, foxnews.com). You “can never escape” T1. It’s “omnipresent,” all day and every day. “Almost every decision that I make during the day has some impact on my glucose control.” Yet, as he reports, relatively few people recognize T1’s effects on mental well-being and few physicians attend to them, which leaves T1 patients and caregivers feeling alone and estranged from potential support. He has been working to change that.
And so have I since Casey’s diagnosis March 2021, when that T1 Roulette Wheel began ruling our own daily life. How could this challenging, scary and all-consuming T1 world be so invisible to outsiders, as it had been to me? I resolved to spread awareness, not just for Casey, but everyone living with T1. Since mid-2021 I’ve helped plan multiple fundraising events for the Juvenile Diabetes Research Foundation, written a monthly column about T1, spoken on podcasts, supported other T1 families on social media and brought people with T1 together. I must still substitute 24-7 for Casey’s broken pancreas, run a small business, help raise 4 children, and fulfill seemingly myriad other obligations, but spreading T1 awareness and assistance replenishes my strength and sense of purpose as I grapple with T1. Making a difference for others living with T1 is vital to surviving my own battle with it.
While this work improves life with T1, it doesn’t change T1’s demands on us. I still don’t want to be waking up Saturday morning and trying, repeatedly, to convince Casey he should move his pump’s infusion site to another place on his body. His legs are bruised, bleeding, and show the wear from needles. He’s too young to understand that if he doesn’t rotate sites, he will develop lumps, scar tissue and hence insulin resistance. I don’t want to question whether I’m making the right decisions when all of the many I make affect his wellbeing. I don’t want to feel frustrated as I watch his blood glucose (BG) soar because he ate the same thing yesterday but today his body reacted differently. I don’t want to tell him he has to exercise right now because high BG is damaging his organs, when all he wants to do is relax. When his continuous glucose monitor (CGM) stops transmitting BG data, I don’t want to ask him to do yet another fingerstick if the first test strip didn’t work.
When I go to bed, I don’t want to fear sleep because his BG is too high or low. I don’t want to wake him up to eat glucose tabs during the night because his BG is heading dangerously low. I don’t want to rush immediately in the morning to change his pump’s cartridge because it’s run out of insulin. I don’t want to hear the jarring BG alarms continually go off, sending waves of angst through me. I don’t want to worry how his BG will react to the next soccer game. I don’t want to feel anxious because we are going someplace where monitoring his BG is more complicated. I don’t want to fear losing sight of him at an event or party. I don’t want to worry whether I really did refill or pack all the innumerable supplies he needs to stay safe. And I don’t want to feel terrified when things don’t go as expected.
On school days, I don’t want to have to pick him up midday because his BG sensor died unexpectedly, or hear that he must go to the nurse’s office so often that he misses projects with friends. I don’t want to just hope everyone grasps the dangers of low BG when he isn’t with me. I don’t want to try, yet again, to explain to Casey that he needs to eat protein with his carbs to help prevent high or low BGs. I don’t want to cringe when he eats dessert, knowing it will likely send his BG high and change the course of the night. I don’t want to beg him to pee on a ketone test strip when his BG is high, because he already feels unwell, irritated and exhausted. I don’t want to remind him to carry emergency supplies on his body because he has a life-threatening disease. I don’t want him to think I’m nagging when I’m trying to keep him healthy and safe, knowing all the consequences that follow if I let my guard down. I don’t want to feel so burnt out from vigilance, exhaustion, fear, stress and worry that I feel physically sick—and knowing he may feel the same one day.
I just want to reclaim life before T1, when we didn’t even realize the freedom we had. I want to stop thinking, watching, planning, calculating, deciding, fearing and problem solving T1 all the time. I want to look at food without thinking of carb numbers and the harm it might cause my child. I want Casey and me to sleep at night and to work and play during the day without carrying the weight of T1 with us. I want the two of us to do everything without doing anything with T1.
So, today, my heart aches, my head pounds, I struggle to take a deep breath. I realize I can’t stop the tears. In this moment, I don’t feel strong, and my children quietly comfort me. I acknowledge it’s ok to feel defeated sometimes when I’m at war with an omnipresent threat to my son’s life. I close my eyes, stop the tears, and breathe deeply. For a while, I will surrender to doing nothing. Then, I will go back to doing everything. That’s what T1 families do.
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.
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