“At first it’s unbelievable, then it feels impossible, then just hard, but then it becomes bearable. Eventually it’s just a lifestyle, still difficult, but possible. No one ever said it would be easy, but it will be okay.”
I don’t know exactly where this quote came from or who wrote it and whether they were talking about diabetes or some other illness or any life struggle for that matter. I came across it some time ago while searching for type 1 diabetes information. It resonated with me and has shaped my thoughts on this journey.
I remember on diagnosis day telling everyone that would listen that my son drank a juice box on the way to the doctor’s office. I wanted them to know that maybe this was why his blood sugar levels were so high; it seemed impossible that what they were telling me was true.
His pediatrician, the emergency room doctors, the nurses all kept telling me the same thing: “Your son has type 1 diabetes.” One doctor in particular told me that even if his pancreas was working, he could drink several juice boxes and a milkshake with a cheeseburger and his blood sugar wouldn’t be 589. It felt unbelievable and so unfair for my son who was only in kindergarten.
Then comes the impossible part: Spending two days in the hospital and learning everything about type 1. How to check blood sugar, count carbs, and administer insulin to my then 5-year-old. It was a whirlwind of information that we were trying to absorb. My son seemed to soak it all up like a sponge. It felt like we were cramming for the biggest exam of our lives that we had no chance of passing.
We felt unprepared, at the very least, to leave the hospital with this new set of rules. I remember thinking “How can they send us home? I’m not a nurse or a dietician. I’m certainly not qualified to be able to handle all of this.” But then, you just do.
Our life now is definitely different than before. Our son Jackson is now 8 years old and in the third grade. He shows us daily his resilience and courageousness. A typical day for Jackson consists of testing his blood sugar five to seven times, having a minimum of four insulin shots, monitoring his blood sugar numbers on his continuous glucose monitor to keep them in a safe range, as well as counting carbohydrates. It truly is a 24/7 disease that requires constant monitoring. Sometimes it’s like having a newborn when you look at the amount of times we are up at night testing and trying to treat a low.
We were taught early on that as long as we made healthy food choices and allowed occasional sweets (just like before diabetes), my son would be able to eat anything his brother ate as long as he had insulin to cover the carbs. This is all good in theory, but the reality is that since Jackson is on multiple daily injections he can’t just eat whenever he wants. Doing so would mean an extra injection.
Simple things like going out for ice cream need to be planned in conjunction with a meal or he has to have a fifth insulin injection — which sometimes he’s willing to do if it means a scoop of cookies and cream!
The most important advice I could give to other type 1 parents is that this disease is certainly not one-size-fits-all and is often unpredictable. You can do the same thing that you did yesterday and the numbers turn out different. Sometimes it just doesn’t make any sense.
My husband and I try to work together and also try to check on each other so that we can minimize our mistakes. We’ve still made plenty, like miscounted the carbs on meals, injected too much insulin, or forgot to inject at all. We move forward and keep doing our best to keep Jackson healthy.
Like the quote says, diabetes is still difficult but no longer feels impossible.
Jennifer Roche is a former high school teacher who now enjoys being a stay-at-home mom to two boys, the youngest of which has type 1 diabetes. When she isn't chauffeuring them to soccer practice, prepping meals, helping out at their school, or fighting the never-ending laundry war, the family loves to spend time together boating, wakeboarding, paddle boarding, and fishing. They currently live in Lindenhurst, Illinois.