I think the thing that frustrates me the most is the misconception that comes along with managing Type 1 Diabetes. Everyone assumes that Type 1 and Type 2 are the same, not realizing that there are two types, hence the two different names.
I can’t tell you how many times people try to tell me of ways to regulate my son’s blood sugars with a special drink or pill. I get tired of trying to explain it, especially to people who don’t really care. The assumption that life isn’t that different when you are managing Type 1, you just add insulin to your day! Get over it, is essentially what is inferred.
I wish I could have “those” people spend a week with me and Carter, to see how our days are completely ruled by diabetes. I can keep our schedule the same, and bring his insulin, and snacks, and carbs etc. but when one low hits, everything stops. The mission at that point is to get his blood sugar to rise in order to save his life. There is no fire drill, every minute of every day is the real deal, and its life or death.
Case in point, two days ago our morning was completely normal. Normal routine, normal insulin to carb ratio, I had dosed carter for breakfast, and he ate the proper amount of carbs I dosed him for. He was playing with his sister as they always do, and as he walked by me he collapsed. I raced to check his blood, which was 36. This was the closest to a seizure we have ever been due to extreme hypoglycemia. I was able to fix it and get him back into a normal blood range, and the most disconcerting part of it was there were no signs that told me he was dipping too low.
But that’s par for the course with Type 1 Diabetes, yet people think managing diabetes is an 8-5 job. We check on our son throughout the night, in order to make sure he isn’t too high or too low. We set alarms, are constantly poking him for blood to make sure his numbers are in range. Hypoglycemia is a silent killer, it steals from you under the confines of sleep, we don’t live in fear, we live in the know. Knowing what we need to be cognizant of and what to look for mean the difference between catastrophic futuristic hardships in the name of kidney failure, blindness, other renal failure problems, or survival and a the life we promised our son when he was born.
People thinking there is a current cure for this disease are completely misguided, and to insinuate that caretakers of type 1 children are being overtly dramatic is offensive. Type 1 Diabetes is like a stubborn, defiant 2-year-old, everything is fine one minute, then the next it’s throwing a tantrum to punish you with absolutely no reason.
So for those who think they have the latest information that’s going to cure diabetes for someone or their child, save it. We have heard it all, and continually intimating that we aren’t feeding our children properly and that’s how they got it in the first place isn’t just inaccurate, it’s abusive. We struggle all day long to keep emotions and fatigue at bay, we don’t need the extra added aggravation of “well-meaning” bystanders to the disease we live with and fight all day everyday.
The reality is my son is reliant on me for survival day in and day out. Many days I feel as though the wrong person was picked to manage that task, but the shoes are mine to fill. If I had been given the job description for a pancreas I never would have applied for the job. There are many things in life we are handed, and we do our best to rise to the occasion. Some days are riddled with trials and failures that we learn from, others are filled with wonderful blessings of perfect numbers and joyous times when we laugh in the face of diabetes and actually can breathe the words “diabetes isn’t the bad!” Yet inevitably we get smacked down the next day by diabetes who unfortunately ends up always getting the last laugh, but the point is we never go down without a fight. So when trying to be helpful to a diabetic or caregiver of a diabetic, just give a hug, that will go a lot further then the latest googled information that proved how a pill cured Type 1 Diabetes in a country across the globe.