Life has a way of throwing curveballs, and for my family, the diagnosis of my daughter, Emily, with diabetes back in 2005 was one of those unexpected challenges. Although it feels like a lifetime ago, the lessons learned in that time have a fresh relevance, especially given some recent personal events.
Parents often worry about their children, and I’m no exception. My firstborn, my son, filled my days with anxiety, as I was oblivious to just how resilient kids can be. However, Emily, the focus of this journey, was quite the independent spirit. She thrived in her own company and was always engaged in some activity, especially if it involved running around—her petite frame was built for speed!
Around the age of three, I noticed Emily’s growth had tapered off, bringing her down to the lower spectrum of the growth chart. We thought little of it at the time, considering our family had its share of petite genes. She remained her active self, delighting in her daycare adventures.
As Emily approached her fourth birthday, other changes began to surface. Her language skills seemed to lag, and she occasionally mixed up pronouns, but she continued her routines, albeit with slightly diminished enthusiasm.
It wasn’t until the winter of 2005 that we couldn’t ignore the troubling signs any longer. Emily was pale, irritable, and lacked energy. Her dwindling appetite was alarming, and the weight loss was particularly concerning. She developed a low-grade fever and began wetting the bed—she also needed to go to the bathroom more frequently. It didn’t take long for my husband and me to suspect diabetes. By the time we connected the dots, Emily’s condition had deteriorated to the point where the pediatrician insisted on immediate hospitalization via ambulance. We opted to drive, though, as I’m known for my driving skills when urgency calls.
In the emergency room, Emily was connected to IVs as healthcare professionals worked to stabilize her dangerously high blood sugar levels. That night, she slipped into a coma and was moved to the Intensive Care Unit. I still remember the sight of the monitors and the dedicated nurse who stayed by her side. Miraculously, Emily revived early the next morning, announcing her need for the bathroom.
When I saw her again, she was watching cartoons, struggling with her breakfast due to the restraints on her arms from IV tubes. She claimed to feel better, but I could tell she was no longer the same child who had entered the hospital just hours before. A new chapter of our lives had begun, one dominated by numbers: insulin units, carbohydrate grams, and blood sugar levels that required frequent monitoring through painful finger pricks.
Navigating this new reality was fraught with anxiety. What if I miscalculated her insulin? What if an overdose led to a seizure? Such fears loomed over me daily as I sought to keep her blood sugar within healthy limits. Emily, for her part, was remarkably brave, tolerating her injections and the constant checks with a level of maturity beyond her years.
It’s one thing to acknowledge that your child has a distinct journey, but it’s another to feel the weight of other parents’ pitying glances, the ones that silently say, “Thank goodness that’s not my child.” There were also challenges with the school district, which initially prohibited Emily from checking her blood sugar at school due to contamination concerns. This led us to file a complaint with the U.S. Department of Education and ultimately win the right for her to manage her health at school.
There were moments of despair when I pondered Emily’s future. Would she face severe complications? Would she lose her sight or kidney function? Those fears drove me to constantly adjust her insulin and dietary plans to maintain healthy numbers.
At sixteen, Emily experienced a seizure—a terrifying event that I managed to navigate using the emergency glucose syringe I’d been trained to use. Thankfully, she recovered without lasting effects and went on to excel in college, majoring in biochemistry and eventually securing a job in a lab focused on blood testing for hemophilia. With the aid of an insulin infusion pump, she took full charge of her diabetes management.
Now at twenty-three, Emily’s condition is well-controlled, easing my worries about the long-term complications that often accompany diabetes. However, we all understand that her safety remains precarious until a cure is discovered, and the path to that goal is still lengthy.
Just last weekend, her boyfriend, Jake, called to inform us that Emily had another seizure but had come out of it on her own. He couldn’t find her emergency syringe, but thankfully, she regained consciousness without needing it. After battling the flu, her dehydration had exacerbated her low blood sugar levels, causing the episode. Yet again, she made a full recovery.
Reflecting on those early days, when people would say, “I don’t know how you cope,” I remain puzzled by that sentiment. I would do anything for my child, and I believe most parents would feel the same way.
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In summary, the past eighteen years have been a journey of resilience, adaptation, and profound love. As we continue to navigate the complexities of diabetes, I remain hopeful for a future where a cure is not just a dream but a reality.