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I’ll always remember March 1, 2021, the day my then-5-year-old son Casey almost died from undiagnosed type 1 diabetes (T1). As I rushed him to the hospital, crippled by fear, I called my mom, tears streaming down my face. Her concern still echoes in my head: “Is he going to be OK?!” All I could say was that our friend Stephanie, herself having T1, reassured me the hospital would help him. Casey had been at her home when she noticed he had symptoms of diabetic ketoacidosis (DKA). Using her glucometer to test his blood glucose (BG), we discovered it was dangerously high—the highest BG she’d ever seen. My mom’s journey in the diabetes world had started long before this traumatic moment, but her grandson’s diagnosis changed everything. Her grandchildren call her Ama.
Ama had been writing and speaking about diabetes care for 10 years before Casey’s diagnosis. Her aim was to help clinicians understand why the self-management job they assign diabetes patients is far more complex and error-inducing than they realize: to control a complicated life-threatening condition, 24-7, with little to no training or feedback. After Casey’s diagnosis, Ama published an article (Journal of Intelligence, 2021, 9(4),61) detailing how diabetes professionals can boost patient success in self-management by increasing the cognitive accessibility of the diabetes regimens and education they give patients. That article cited my first four columns in The Hammonton Gazette to illustrate the confusion, fear and exhaustion T1 parents experience when returning home without the know-how and support required to keep their newly-diagnosed child safe and healthy. Doing so requires keeping BG in the normal range. Prolonged high or low BG can be deadly in the short run, while frequent highs and lows progressively damage multiple organs over time, leading to heart disease and other conditions that often shorten life. Keeping BG always within range isn’t realistic, but learning methods to increase time in range is crucial.
Like many families heading home from the hospital, we were terrified to hold Casey’s life in our hands after only a handful of hours of instruction. Soon after, we lost his medical team when our health insurance company went bankrupt. Ama helped find Casey new insurance and another pediatric endocrinologist. However, we had to wait almost two months to see him, he offered no feedback or follow-up, and there was no diabetes education program at his location. Ama was our lifeline in those early months. We had become a stark example of the insufficient training and support she had been writing about.
She was there when Casey returned home. I snapped a picture of them engrossed in a board game. Ama was trying to return some normalcy to his world. But she also knew that mine had been shattered; that life would never be the same. She stayed with us those first weeks as we navigated our frightening new reality, helping however she could. If we couldn’t convince Casey to perform some essential diabetes task, she would work her magic. With a hug and comforting voice, she would help him do a finger stick, wait to eat, accept a low-carb substitute, take the next injection or recover from high or low BG.
As small business owners, either my husband Sam or I must stay at work, meaning only one of us can attend Casey’s medical appointments. Ama therefore attends them all despite living an hour away. This is why Casey is excited to go to diabetes appointments. He runs to hug her, exclaiming “Ama!” She comes bearing snacks, plus games to keep him entertained. During appointments, she asks science-based questions while I focus on experience-based ones. Afterwards, Ama joins us for a meal nearby, so they can spend more time together. And whether eating at home or elsewhere, Ama helps figure out the meal’s carb count, making sure it also contains protein to better manage his BG.
When Sam has to travel, Ama stays with me and our four children, ages 4-10. Managing a small business, family and child with T1 is difficult without help. She also knows I am exhausted from often waking up to correct Casey’s BG, so she insists on responding to his BG alarms when staying with us. Ama has the same Dexcom Follow App on her cellphone as we do, so she can follow Casey’s BG readings remotely and receive alarms when his BG goes too high or low. She is the reason Casey didn’t die one night in his sleep. She telephoned me after midnight when she happened to see Casey’s BG dropping fast. He was in imminent danger of becoming comatose, but none of us had received any alarms.
If you meet her, you will likely see Ama wearing a shirt supporting Casey, such as: Proud Grandma of a T1 Warrior, Proud Supporter of Casey’s Companion, Elvis (the D.A.D.--diabetes alert dog—Casey will receive this month), or Casey’s Clan: Kicking Type 1 Diabetes with D.A.D. Elvis. Ama has participated in and contributed to the various events we’ve held or helped organize to raise funds for the Juvenile Diabetes Research Foundation or for Casey to get Elvis.
If you visit, you will see Ama building Legos, playing board games or hide-and-seek or just enjoying the outdoors with Casey and his siblings. Or she might be organizing Casey’s diabetes supplies or ordering more of them. Before we had a T1-knowledgable babysitter, she filled in so Sam and I could have a night out. And, she is there to comfort me whenever I’m burnt out or grieving that Casey has to live with a life-threatening disease.
I recently posted a picture on various diabetes support pages of Casey lying on Ama’s lap and her kissing his head while they played a favorite word game on her cellphone. Casey was recovering from low BG and feeling unwell. I mentioned how grateful we are to have her support. The T1 community responded immediately, its sentiment captured by these comments: “You are very lucky!” “Wow. That is love.” “What a blessing!!” “This is so special.” “What an incredible grandma.” “An understanding support system is a wonderful thing.” “I wish we all had someone like that to help out.”
We love you Ama! You and Casey have a special bond. With you, he will always be more than OK. Thank you for that and much more.
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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