Six years ago, our world changed by a simple finger prick.
While we knew cold and flu season had been particularly brutal for us, what we didn’t know was that a string of (what seemed like) disparate symptoms would change the course of our future.
If you’re not familiar, unlike Type 2 Diabetes, which many are familiar with, Type 1 Diabetes is an auto-immune disease where our immune system mistakenly begins attacking the insulin-producing (beta) cells of our pancreas. Type 1 Diabetics are dependent upon insulin administration their entire life. Insulin is critical in maintaining blood sugar levels and is necessary to their livelihood and outlook. Considering that November is National Diabetes Awareness Month, it felt particularly important to share this journey from a maternal perspective.
Diabetes, while it has been a deep journey of learning, it has also met its hard times, feelings of disenchantment, and honestly, the hatred for the cards dealt to us. But, what I hate most about diabetes or really any juvenile chronic illness is the freedom it’s robbed us of and, most importantly, my oldest’s childhood. Six years of childhood reenvisioned. Never a day goes by without the obstacles of “who’s on first,” caregiver burnout, adjusted expectations, and realization of a new normal.
So in an ode to a 2000’s classic, here are the (less than ten) things I hate about you, Diabetes.
- Constant companionship. Sleepover with friends, no. Solo birthday parties without a parent, hardly. Diabetes is unfamiliar to most, and the constant care or watching scares many, so our oldest is rarely without adult or parent support. This means we’re constantly in the shadows, monitoring and watching, even when we’re too tired to do so.
- 24/7 commitment. While technology is wonderful, it still needs to be monitored. The never-ending blood glucose alarms are on all night, which means we haven’t had a good night’s sleep since 2017. Someone and something is always needed, whether at school, home or overnight. There’s never a break, and decision paralysis comes often.
- Severe ups and downs. Ever been a little bit ‘hangry’? Multiply that by a thousand. It’s the best way to describe your behavior when you’re going through the peaks and valleys of blood sugar changes. It can be chaotic, emotional, and downright scary. And it’s not just once or twice a day but every five minutes. A pressure to make sure you’re catching it at the right time.
- Master of None. Diabetes is a calculation game. How many carbs is this? How much should we dose for that? Will this spike his blood sugar? Do we have enough apple juice on hand if he goes low? Even with all the education, reading, and training, Diabetes is unpredictable. Even in the most controlled patients, environmental, emotional, and developmental changes can drastically change your blood sugar and care. You never really get a handle on what is working, so it remains a mystery.
- Anxiety, anxiety, anxiety. Caretaker burnout is REAL and should be seriously considered. Family members blame themselves— is it genetics or diet? Should I dose him or not? Is it too much insulin? Or just enough? What’s this month’s out-of-pocket cost? Will he be able to wear his continuous glucose monitor all month? The inconsistency of answers and control can be tasking on any person. Add in the child’s inability to understand their own diagnosis and fears; it can be overwhelming.
If you are the mother of a child with Type 1 Diabetes or another chronic illness, know you are seen and heard. This journey is difficult and its okay if you hate it, too.
