Welcome to my JDRF Walk to Cure Diabetes personal fundraising page!
I'm joining this year's Walk to raise funds to help find a cure for my son, Noah. Noah was diagnosed with T1D at the age of 22 months. He was leaking his diapers at night, and seemed hungrier and thirstier during the day. Everyone told me it was just a phase, but I knew something was off, and that he probably had diabetes. Unfortunately, I was right.
We spent three days in the hospital, and Noah was such a little trooper, but he wasn’t a fan of being poked and prodded. When one of the nurses came in, Noah immediately waved at him and said, “Bye!” We also couldn’t have anything with dinosaurs on it for a while after the hospital, because his IV line had been covered with a dinosaur bandage. But he took to the new lifestyle in stride. He never complained about the finger sticks every two hours, although his insulin pump site changes (that had to happen every three days) were scary for him for a few years. We’ve tried to keep things as normal as possible, but he’s a smart kid. One day when he was five, he asked me, “Mom, if I didn’t have my buttons, I would die, right, because I wouldn’t have any insulin?” I wish my son didn’t have to worry about his own death at age 5.
A typical day for Noah goes like this:
7:00 a.m.: We check his sugar for him first thing in the morning because he’s usually still sleeping. He tends to be more resistant to insulin in the morning, so as long as he is in the normal range or higher, we go ahead and give him insulin to cover 20 carbs worth of food. We know he’ll eat at least 20 carbs at breakfast, and it takes insulin about 30 minutes to start working. He gets up, eats, and then we give him more insulin if he ate more than 20 carbs. We have to count everything that he puts in his mouth, and it’s better if he gets the insulin for it at least 20 minutes before eating. That means I have to try to think ahead about what I’m going to serve and how much he’s going to eat, which I’m not always that good at.
9:30 a.m.: He gets checked about every two hours, so at 9-9:30 we check him again. If he is running low, we have to give him some juice and re-check him in 15 minutes to see if he’s in the normal range. Low blood sugar is extremely dangerous. If he goes low enough, he could have a seizure, go into a coma, or die. We’ve been so lucky that he’s never gotten that low, and I hope he never will. If after 15 minutes we’ve checked him and he still isn’t within range, we give him more juice. We continue this cycle until he’s in range. Once he gets in range, he can have a snack if he wants. And then we give him insulin for the snack.
11:30 a.m.: We check again, and hopefully by this time I know what we’re having for lunch and we can give him insulin for what I think he’ll eat. It’s pretty funny, I was always against thinking about carbs or calories or what I was eating because it seemed neurotic to me, but now that my son has to do that to stay alive, I can tell you how many carbs are in just about anything! (Unless it’s restaurant food – I swear they’re putting extra carbs in there because our estimates when we go out to eat are always off.) After he eats, we give him any extra insulin if he ate more than what I thought he’d eat at the beginning of the meal.
2:00 p.m.: We check again. If Noah’s sugar is high, we’ll give him insulin to bring him back down. High blood sugar over a few hours or days can be dangerous, too, leading to coma or death. Also, high blood sugar readings over your lifetime can lead to serious complications in every body system, including (but not limited to) heart disease, kidney failure, blindness, amputations . . . the list seems endless. He gets nauseous and feels terrible if his sugar is really high, but there’s nothing we can do but give him insulin and wait it out, which usually takes about an hour for him to start feeling normal again.
3:00 p.m.: He usually wants a snack around this time, so we’ll check his blood sugar again, count the carbs in the snack, and give insulin.
5:00 p.m.: Dinner time, check blood sugar again and give insulin based on an estimation of what he’s going to eat. If he doesn’t eat enough to cover the insulin we gave him, we just watch him really closely to make sure his blood sugar doesn’t drop. It probably will, but sometimes it doesn’t. There are never “sure-thing” predictions with Type 1.
7:30 p.m.: Getting ready for bed, so we check him before he goes to bed and adjust however we need to (juice or insulin depending on the reading).
11:00 p.m.: He’s sleeping, but we check him one more time around 11 p.m. to make sure he’s high enough to last through the night, but not too high. High blood sugar also makes you have to pee, so we have to get him up to empty his bladder or he will wet the bed. Another concern at night is low blood sugar. Nighttime is the most dangerous time for someone with Type 1 because they may go low and not wake up to correct it, which can result in death. There have been many nights when parents’ intuition has gotten us up at 3 a.m. only to discover that Noah’s blood sugar was low, and we were able to get him some carbs to bring it back up.
So that’s a typical day. If we travel, we have a whole other set of issues. Being in a new location, eating different food, having different levels of activity or excitement, all can affect Noah’s blood sugar. We have to be extra vigilant and usually end up checking and correcting him every hour if we are on vacation. There is also a huge list of supplies that you have to be sure to pack, because it can be difficult or impossible to find a replacement for life-saving items when you’re out of town. We’ve had to turn around and go back home, adding hours to our trips, or cutting trips short, or spending a lot of panicked time on the phone with medical equipment companies because we forgot something or had an equipment failure.
Right now, most of the responsibility for Noah’s management is on us, because he’s six years old. He’s starting to take on more responsibility, like checking his own sugar and inputting his own numbers into his pump, but diabetes is a lot to manage. We get tired, and there are three of us working on it together. There are no days off, no breaks, not even for a minute. I hate that there’s going to be a day when Noah has to carry all of this responsibility on himself. That is why we are walking. We want Noah to not have to worry about checking his sugar 10 times a day, counting everything he eats, wondering how many carbs are in his food, wondering if he’s going to wake up in the morning. JDRF does amazing things for diabetes research, and I believe that one day they will help researchers find a cure.
Please support my commitment and donate to my Walk fundraising efforts today. Thank you for your help in finding a cure for Type 1 Diabetes.
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