In the fall of 2013 our active, social, vibrant, cheerful, and athletic 4-year-old son caught a bad virus. It seemed like even after the virus was gone he was not fully recovered. He started drinking a lot. He would drink the entire contents of a large water bottle, use the bathroom, ask for a refill, drink it, and make a return trip to the bathroom. If we tried to limit his water intake, he would get very upset. At dinner he would drink three glasses of milk and then not be able to eat since he was so full. At this time, his preschool had noticed many trips to the bathroom during the day, but did not mention it to us at the time.
I started researching causes of sudden onset extreme thirst in toddlers and the result that always came up was Type 1 diabetes. One of my college roommates had Type 1, so I was familiar with it. I was hoping this was not what he had. No one in either my extended family or my husband’s extended family had any Type of diabetes. There is also no family history of autoimmune disorders.
However, the longer these symptoms persisted the more I started to worry. After our son wet his bed two nights in a row, I decided it was time to see the doctor. The scheduler told me that there were not any open appointments, but after hearing the symptoms had us speak with a nurse who squeezed him in late in the afternoon. After a day of playing outside making snowmen, we took him to our regular clinic where he was diagnosed with Type 1 diabetes. Since he had an A1C of 10.2 and a blood glucose level 663, we were instructed to go home, pack a bag for a few days and report to the children’s floor of the local hospital. Luckily he was not in full-blown DKA and we only had to stay one night. He was discharged on 12-31-2013 and we went home to start a new year that was new in a really big way.
Henry has now lived with Type 1 for a little over 2 years. He checks his glucose level via finger poke 7-8 times a day and even more when he is sick or on days that he is extremely active. He started checking his own glucose levels while in the hospital and has always wanted to do as much of his own care as he could. He now uses an insulin pump that delivers insulin without daily injections. Instead of injections he is attached to his insulin pump 24 hours a day via a tube and needle that gets changed every 2-3 days.
The fact that Henry has Type 1 has not been easy for him or for our family, but we have tried to keep our lives as normal as possible. Henry loves all things Star Wars, Pokemon cards, the Green Bay Packers, playing with our dog, swimming, skiing, climbing trees, and just plain running around being a kid. Henry loves sports. He played his second year of soccer the summer following diagnosis and in the fall after his diagnosis he started playing ice hockey.
We have no family history of hockey, either, but Henry chose hockey on his own and it suits him well. He had been asking to play hockey since the winter right before he turned 2. We live in a hockey-crazy town and all of the neighborhoods have outdoor rinks. Whenever we would drive by one, he would talk excitedly about the “hockey boys.” He let us know he wanted to start playing as soon as possible. We kind of put it on the back burner until he was 5 and decided that since he kept asking that now was the time to get him on a team. We did not let Type 1 interfere with something he really wanted to do.
Henry is now finishing up his second year of Mite I Hockey and will move up to Mite II next year. He has found a new hero in Max Domi, a rookie on the NHL team of the Arizona Cardinals who also has Type 1. Max Domi is considered one of the most promising rookies in the NHL. Also, we found out that one of the highest ranked high school players in Minnesota, and maybe the nation, has Type 1. This boy will be playing for our local university’s Division 1 Hockey Team this coming fall. We cannot wait to see one of his games. Even more importantly, there is a boy with Type 1 who went to Henry’s school last year who is now playing middle-school level hockey. This boy has been an up close and personal role model for our son. We feel blessed that there are so many great examples of people who can still excel at what they choose to, even when it means a lot of extra effort.
One of the big challenges we encountered was sending him off to kindergarten and trusting he would be safe. After a bad experience in considering enrollment at a nearby public charter school without a nurse, we luckily found that our neighborhood public school has a wonderful school nurse who understands the needs of a child with Type 1. I wish all schools had nurses. We are so grateful that our school does.
I am also grateful that our clinic took our concerns seriously and did not put off our appointment until after the holiday. Some children with Type 1 are misdiagnosed and end up in the emergency room unconscious and near death before it is recognized that they have Type 1.
We are also extremely grateful that our son is a trooper and keeps an amazingly good attitude about the way his life has so dramatically changed. He is still the charming, thoughtful boy we knew before and he still has one of the world’s most winning smiles. We continue to support the development of new treatments and are thankful for new technology, but ultimately we are waiting for a cure.
Read Baseball, Rock ‘n roll and Insulin Shots by Roman Distefano.