When people find out that our son has Type 1 Diabetes, very often the next question is some form of what happened or how did he get it. Our story isn’t unique, in fact, if it is unique it’s that it was caught early and before a stay in the hospital with DKA. It was a holiday weekend at school and I took my two boys on a road trip to Utah to visit my best friend who is like a sister and her family. We had a long weekend of costumes, candy, sight-seeing, and fun ahead of us.
I loaded my 5 and 8 year old up in the car with a ridiculous amount of toys, artwork, and snacks in an attempt to limit the screen time for the seven hour car ride. I made sure they both went to the bathroom and we got on the road. About 15 minutes into the ride my 5 year old son, Evan, said he had to go to the bathroom. Wow, I was annoyed. I just asked him to go before we left. But I pulled over, we made a stop, and kept going.
An hour later, another request for a bathroom break. I was sure he was trying to get me to stop so he could get out and play and not be in the car. This had to be a stall tactic and I was beyond annoyed at this point. We made the trip, with more stops than I could count, and got to Utah.
The whole time we were there he was drinking water and milk and everything in sight, he couldn’t get enough to drink. And then he wet the bed one night, which he hadn’t done in years. I was perplexed, embarrassed, and I couldn’t understand what was going on. I asked him to slow down on the fluids at night and he lost his mind with a tantrum as if I’d asked him to cut off an arm.
After dinner the kids were playing and I was trying to process what was off about him. My best friend is a doctor and we went into problem solving mode. Maybe it’s because we’re traveling, maybe he’s eating more sodium and sugar than we do at home so he’s extra thirsty, maybe he was so tired from playing he didn’t wake up and that’s why he wet the bed, maybe he has a UTI, who knows, but he’s probably fine. I remember now in retrospect my friend saying it could be Type 1 Diabetes but that’s really rare, and I had never heard of it, so we both quickly left that possibility.
We finished our trip, drove home, and stopped again more times than I can count. I realized the kid had drank more water on that trip home than I’d ever seen him drink. When I got home I talked with my husband. Again we tried to decipher what was happening. In our house if you are sick the first thing my husband tells you is to drink more water (no matter the issue), so he was feeling pretty good that Evan was following his advice. We try not to overact on kids health, try not to do a lot of medicine or other interventions, so we decided to keep an eye on it, but not do anything for now.
I flew out for a work trip in DC the next day and called home for an update that evening. Nothing had improved and Evan was starting to act like he had the flu. I was sure at this point that he had a UTI, and maybe the flu on top of it. So, my husband agreed to take him to the doctor the next day. I went to my work meetings and that evening at 8pm eastern, my husband called, they had just left the doctor’s office.
I could tell immediately that my stoic husband was holding back tears. He told me our doctor said Evan likely had Type 1 Diabetes, that she had to give him a shot of insulin in the doctors office and his blood sugar was well over 700. I had no idea what T1D was! My first question was an angry one about how in the world a healthy, skinny, 5-year-old boy has diabetes. Again, ignorance about what it was at that point. Then he told me that we had an appointment at a place called the Barbara Davis Center (BDC) in the morning at 8am and we both had to be there. So I had to leave work and find a flight to Denver and meet them by 8am. I frantically got off the phone to book a redeye flight home and packed quickly.
I spent the whole flight home on the slow plane WIFI reading about T1D and quickly realizing that this was no regular diagnosis. I was reading about no cure, shots, blood tests, DKA, comas, seizures, pumps, and more. I’m sure everyone on that plane thought I was crazy or on my way to a funeral because while I was googling I was also bawling.
At 8am I met my family at BDC red-eyed and weary, having not slept a wink. They did a bunch of tests on Evan to confirm the diagnosis and you could see my husband and I both deflate when his T1D diagnosis was confirmed (I think we were both still hoping someone had gotten something terribly wrong). Then we had a full day of training. We saw the doctor, nurse, social workers, and dietician. We learned what the disease was, what a healthy blood sugar range is, why exercise and diet doesn’t help T1D, how to test blood sugar, how to give shots, what insulin was, how to count carbs, what not to eat, what to eat, and so much more. It was a ridiculously overwhelming, but ultimately helpful day. We left with a whole bag of medical supplies, a bunch of books on how to care for our child now, and so much fear and anxiety.
My most salient memory was giving Evan his first shot of insulin. I had no idea what I was doing. He was crying, I was crying, and every cell in my body was screaming not to do it to him, he’s just a child. But I knew I had no option, and neither did he. So I fumbled through it with the support of the nurse at BDC. And all three of us left foggy-brained ready to face our new normal back home. We drove home mostly quiet, all of us left to our own thoughts or just exhausted from the day. And we put one foot in front of the other to figure out how to live as normally as possible with this disease.
Now, four years later, Evan’s T1D is a huge part of who we are as a family. We have since become fluent in the language and lifestyle of T1D. And have thrown ourselves into helping others with the daily struggles of this disease. Every day he impresses us with his strength, resolve, and caring heart. Don’t get me wrong, every day I hope for a cure so he can lead a healthy and full life. But I am proud of the way we as a family drew on an inner reserve of grit and determination to keep Evan safe and to make sure he gets everything he deserves from life. The discovery of this strength in Evan, and in all of us, is the one true gift we received with Evan’s T1D diagnosis.
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