Em: I wish it was like, take a pill. Bam! You don’t have Type 1 Diabetes anymore.
Emma was diagnosed with Type 1 Diabetes a little over a year ago. It was actually Groundhog Day 2016. Every day does feel a bit like Groundhog Day in my head. Anyone who has been given the charge of keeping themselves, or a loved one, alive with medication will understand. You can’t forget any part of the plan. For us that plan includes checking her blood glucose (BG) level 5-10 times a day, and providing her with the right amount of food and/or insulin to keep her body working. This means that Emma is receiving, at the very least, four carefully calculated shots of insulin a day. One of us wakes up every night at 2:00am to check her BG level while she is asleep. If she is too low, we have to wake her up to eat or drink something and then check again in an hour. If she is too high, we give her another shot of insulin and check again. The “we” is usually me. As her mom, I am up no matter who is checking her: Even if she is at her dad’s house, 15 minutes away.
Every day that I wake up and Emma is still alive in her bed is a good day.
A question I get a lot is, “What were the signs that Emma had Type 1 Diabetes?” I am here to tell you that the signs are easy to miss. Before Emma was diagnosed she thinned out (growth spirt, we thought), was falling asleep in the car (pubescent, we thought), and had crazy sugar cravings (who doesn’t, we thought). She was also thirsty all of the time. But the symptom that brought us to the doctor was that she started to wet the bed. This was something Emma never did before this. But Enuresis runs in my family, so it was not all that surprising to me. Just kind of a bummer. When we went to the doctor for the third time about this, it was discovered that there were ketones in her urine and her blood glucose level was 589. I had no idea what that meant at the time, but apparently number could put someone in a coma. “But she looks so good and she feels good,” the doctor said. “I’m still thinking it could be Type 2.” Emma was taking some medication that the doctor hoped could have cause Type 2 Diabetes, the curable one. We confirmed it was Type 1 when we checked into the hospital the next day.
Type 1 Diabetes has no cure. You don’t cause it and you can’t prevent it from happening. Although it is thought that there could be some environmental factors involved, we only know for sure that it is genetic.
Unlike many people with Type 1, Emma does not feel any different if her blood sugar is high or low. It is nice for her that she doesn’t feel sick all the time, but it made it much harder for her doctors and I to diagnose her T1D and it makes it more difficult to treat. This weekend we are inserting a Continuous Glucose Monitor (CGM) under her skin. This will give us 24/7 readings of her BG level, and let us know if her numbers are going up or down. She is looking forward to less pricks throughout the day (down to two). I am hoping that I will get a little more sleep, but not really counting on it for a while.
When your child gets diagnosed, and you get your head around the responsibility of it all, one of your fears is how this disease is going to impact your child socially. But your friends turn out to be brave, too. We have been so fortunate to have people in our lives who have jumped into the learning with us. You discover that you have friends that truly love your kid, too…enough to host them for a sleepover, calculate insulin units, and wake up at 2:00am to test their BG level.
Emma is so much happier and healthier now. She would do anything for a cure, but she takes responsibility for her health in a way that 10 years olds don’t usually have to. Her teachers, who have also been remarkable members of Team Emma, have noticed how much more focused she now. In hindsight we can see that she would get spacey in class. Leading up to her diagnosis, Emma would need to use the restroom more often (another symptom) and would also ask to leave the room because she could not focus on her work. “Spacey” is still something we look for in Emma, and ask her to check to see if her blood sugar is high or low when this happens.
If Emma has a complete screaming meltdown (usually only targeted at me, another perk of the job as Mom) I ask her to check her levels. She is almost always in normal range. She is still your average pre-teen pubescent 10 year old girl who, with our help, “simply” has to be her own pancreas until there is a cure for T1D.