This is not a story about turning adversity into triumph. Instead, it’s a personal account of a life-altering event that affected my daughter, myself, and our entire family back in 2000. Although that time may seem distant, it has taken on new significance following another recent challenge we faced together.
As a parent, worry is a constant companion. Some concerns can be exaggerated, especially for those of us prone to anxiety—like me. My first child, a son, filled my days with anxiety simply because I was unprepared for how resilient children can be.
On the other hand, my daughter, Lily, didn’t cause me nearly as much stress. She was independent, content to entertain herself, and energetic, joyfully participating in various activities, likely due to her small stature and quick running abilities.
However, when Lily turned three, we noticed a slowdown in her growth; she soon fell to the lower end of the growth curve. We didn’t think much of it—there were petite family members on both sides. She remained spirited and a bundle of energy at her daycare.
By the time she was four, we began to notice troubling changes. Her vocabulary stagnated, and she struggled to use pronouns correctly. While she continued her usual activities, there was a notable decrease in her enthusiasm.
Then, in the winter of 2000, alarming behavioral changes became apparent. Lily appeared pale, irritable, and increasingly fatigued. Her lack of appetite was concerning, and her weight loss was the most distressing symptom. She experienced low-grade fevers and bedwetting at age five, along with frequent bathroom trips. My husband and I began to suspect diabetes. By the time we reached this conclusion, Lily was so ill that the pediatrician suggested an ambulance would be quicker than our drive to the hospital. Despite my anxiety, we drove her ourselves; I can be quite the aggressive driver when needed.
Upon arrival, she was quickly admitted to the emergency room and connected to multiple IVs as the staff worked to stabilize her dangerously high blood sugar levels. That night, she slipped into a coma and was moved to the Intensive Care Unit. A machine monitored her condition while a nurse remained by her side. Miraculously, Lily emerged from the coma around three in the morning, requesting to use the bathroom.
The next morning, I found her watching cartoons, struggling to eat breakfast with plastic utensils due to her arms being strapped to boards to secure the IVs. Although she claimed to feel better, she was undeniably different—a chapter of her childhood had abruptly closed.
From that moment on, our lives revolved around numbers: insulin units per carbohydrate grams, blood glucose levels, and painful fingertip pricks several times a day. We learned to mix long-acting and short-acting insulin, calculating doses based on her meals and activity levels, often when she wasn’t even hungry.
This reality was accompanied by an unsettling mix of anxiety and fear. What if I miscalculated the insulin dosage? What if she had a seizure from an overdose? What if I failed to recognize her blood sugar rising? Daily, I fought against these thoughts, sometimes multiple times a day.
Lily handled her situation remarkably well. She understood the necessity of her “tummy pokes,” our term for her bi-daily injections, even though she despised them. However, she resented my frequent inquiries about her blood sugar levels.
It’s one thing to recognize that your child is different, but it’s another when other parents communicate their sympathy with looks that say, “Thank goodness that’s not my child.” It was challenging to maintain control over a situation that could spiral out of hand at any moment, especially when the school district initially refused to allow her to test her blood sugar on campus due to contamination concerns—a struggle that led to a successful complaint with the U.S. Department of Education.
There were moments of despair. I feared for Lily’s future—would she suffer severe complications by the time she turned thirty? These fears motivated me to continuously adjust her insulin and food regimen to keep her numbers in check.
Another setback occurred when Lily experienced a seizure at age sixteen. Following my training, I was able to administer glucose directly into her thigh muscle. While terrifying, she suffered no lasting effects. As she transitioned to college, she took charge of managing her diabetes, aided by an insulin pump that eliminated the need for daily shots.
Now, at twenty-three, her health is excellent, and we are grateful that we no longer worry about the severe complications that many diabetics face. Yet, we remain aware that her safety is not guaranteed until a cure is found.
Just last weekend, her boyfriend, Jake, called to inform us that Lily had another seizure and was heading to the hospital. Thankfully, she regained consciousness on her own, though the absence of her emergency syringe complicated matters. She had recently recovered from the flu but failed to hydrate adequately, causing her blood sugar to drop dangerously low. We suspect dehydration intensified the insulin’s effect. Fortunately, she made a full recovery once again.
Reflecting back to those early days, I often hear the phrase, “I don’t know how you do it.” I am always taken aback by this sentiment because I would do anything to ensure my child’s well-being—and I believe you would too.
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Summary:
Over the past 18 years since my daughter Lily was diagnosed with diabetes, I’ve learned about resilience, the importance of vigilance, and the power of love and support in navigating life’s challenges. From the initial shock of diagnosis to managing her condition as an adult, our journey has been transformative. While we’ve faced numerous obstacles, the bond we share and the lessons learned have shaped our lives in profound ways.