Smith was diagnosed with Type One Diabetes (“T1D”) at 2.5 years old. T1D is an autoimmune disease in which a person’s pancreas stops producing insulin – a hormone essential to turning food into energy. Without insulin, a person with T1D will become ketotic and dehydrated, go into a coma, and die. Smith needs insulin every day to survive. It’s a lifelong disease that will not go away without a cure. It can be a frustrating and difficult disease because in a way it’s invisible. Outside of seeing his pump and continuous glucose monitor (CGM), everything is internal. However, it requires constant monitoring and decision making. And because of the misconceptions that the name holds, it can be lonely and hard for others to understand.
The weekend of Smith’s diagnosis, I noticed he woke up with a limp that gradually got worse. We took him in for xrays which came back clear. The doctor suggested we get lab work to make sure there wasn’t an infection. My gut was telling me something was wrong, so I called the office and asked them to check his blood sugar with the blood draw they did that morning. I told them Smith had been peeing through his diaper at night for about a week and was drinking more water than normal. Looking back, I see the signs so clearly, but in the moment, it just seemed normal – like we were going through the terrible twos. He was having angry outbursts, falling asleep randomly throughout the day, drinking a lot of water, and we were changing diapers all.the.time. When I heard back from the doctor, he didn’t believe the reading was accurate as the blood draw had been done hours prior. Smith’s blood sugar was 583, and at the time, I didn’t realize how dangerously high this actually was (a nondiabetic range is between 70-120). We had his blood sugar checked again by a friend, and it was in the 400s after not eating for 3 hours. We went straight to the ER and spent 3 days in the hospital getting his blood sugar into a normal range. Thankfully, we caught this early and Smith wasn’t in diabetic ketoacidosis (“DKA”), which can be life threatening.
The hospital stay was overwhelming. I remember sitting in the closet crying because it felt too overwhelming. There was a lot of information to learn. There were too many scary complications. It just felt like too much. I didn’t want Smith’s blood sugar to go too high because that can cause long-term complications (e.g. kidney damage, nerve damage, blindness, etc.), but I also didn’t want his blood sugar to go too low because that’s an immediate danger. We give insulin to Smith every time he eats. We calculate the number of carbs at each meal, the fat, the protein, glycemic index and load – all of it is important to keep his blood sugar from going on a crazy rollercoaster. Growth spurts, weather, activity, adrenaline, sickness – everything affects your blood sugar. Your pancreas is truly amazing!
Thankfully, we have an amazing endocrinologist here, and he put Smith on a CGM almost immediately, and we were on a pump within a few months. I am extremely thankful for the advances in medicine. 100 years ago, insulin didn’t even exist. Today, Smith wears a CGM that we change every 10 days and a pump that’s changed every 3 days. He has an iPhone (yes, I know 🤪) as a medical device that allows us to monitor his blood sugar at all times. We don’t leave our house without juice to treat low blood sugars or extra insulin and pumps to treat the high blood sugars.
We’re a year and half into his diagnosis, and on most days, it feels like we’ve figured out our new normal while other days have us questioning everything we thought we knew. I could give Smith the same meal every day and his blood sugar will likely do something different each time due to all the variables at play.
Before October 2020, I had zero understanding of T1D, but the community we found this past year has been nothing but wonderful. We were told from the beginning to not let this disease define Smith or our family. Not to turn it into a “woe is me” disease when the hard days outweigh the good. Our goal has and will always be for Smith to be the wild and crazy boy he’s always been and to live his life without diabetes being at the forefront. People always ask how Smith’s doing – and he’s fantastic! It’s a manageable disease and for that we are so grateful!