A Day in the Life of a Child with Diabetes

My son, Gauge is 5. He was diagnosed with diabetes in February of last year. Already having a disadvantage, he is in a wheelchair with a muscle weakness, this news was to say the least, upsetting. After all his challenges, why my boy, my sweet five year old baby boy. But, like everything, he has handled it with courage and grace. He knows what he has and even checks his own blood from time to time, but it doesn’t make it easier. If you don’t know what diabetes is, just know that it is a balancing act, every day. From the moment he wakes up, we start by checking his blood. This involves  prick of one of his tiny fingers. People with healthy-working pancreases have glucose levels that range from 70-140. Gauge has parameters that we have to keep him in between and that is 80-180. This means we don’t want him going low because low glucose levels cause a person to crash. Gauge gets droopy eyes and sometimes he gets sweaty. If it goes too low he can have a seizure. When their glucose levels are high is also bad as this can cause damage to his nervous system, circulation, his eye-sight—so many things—in the long run. So, we check his levels and then count the carbs he is going to eat at breakfast. I won’t get into that math as it won’t make any sense to someone who doesn’t know what the heck I am talking about. Depending on what his levels are and how many carbs he is about to intake, I measure the insulin dose on his humalog pen and inject it into the back of his little arm. Then I log what his levels were, what food he ate, how much he ate and what the carbs were in a little book that I keep in his medic-pack. Then we play. Before school, I check the lunch calendar to see what he will be eating that day and check the school’s website for the carbs. I log it in the book, carry my 40lb boy to the car and take him to school. When I get there, I take out the wheelchair—at home he uses his “lobster” crutches or crawls—I put him in his chair and wheel him in. I sign him in, take off his coat and backpack and take him into a back room where I take out his meter, poke his poor finger, and check his glucose levels. Depending on where he is at, I measure the units of insulin, inject his little arm, and kiss him goodbye. (He is in half-day pre-school) At snack time, the teachers take out his meter, poke his sweet tiny finger, and if he is within range, he is allowed to have the snack they have. If he is too high he gets string cheese. If he is low, below 70, we give him apple juice and 15 grams of carbs per snack and re-check him again in 15 minutes. After school, if it is a Monday or Wednesday, I take him to karate. His instructors love him so much and let me wheel him around the mat with the other kids his age. He loves it! At dinner, I poke his precious finger, test his blood, count the carbs and inject his little arm. At bed time, I poke his finger, test his blood and then give him a longer acting insulin in the belly for night time. We want his glucose levels to be 140 for bed because lows in the night can be scary. And that is our day. Every day. My husband works on the road two weeks at a time and helps as much as he can when he’s home, but every other two weeks I do it alone. But Gauge always has to endure this. It is a horrible disease and I wish that I could take it from him. But I can’t. The research their doing is amazing but nowhere near a cure. We will get him on a pump eventually and that will be less pokes, one every three days, but he will always have this. I couldn’t protect him from this horrible thing and that kills me. If there was anything that I wished for, it would be to take this from him. Diabetes is an awful thing.

 

That is my rant for the day.