“Sometimes there just aren’t enough hours in the day, are there? I already thought my life was crazy but the day my 3-year old was diagnosed with Type 1 Diabetes and his survival depended on me, I quickly learned I better get used to the days being too short and nights even shorter. There has not been a single day since Kylar’s diagnosis on January 10, 2016 that I get a good night of sleep or leave the house without packing a bag of supplies. Kylar’s life, my life and all of our lives were forever changed.
He had bandages on every finger, his arm taped to a board to keep him from pulling at the IV, the heart monitors all over his chest….just days before I thought I had a beautiful, happy, HEALTHY toddler. He had been acting “off” for a while but no real symptoms of being “sick.” There was no fever, no vomiting, no runny nose, no cough. He had been helping himself to the sink and fridge often, drinking whatever he could reach….even at 3AM. I would wake up to him drinking milk from the jug in the dark with nothing but the refrigerator light from an open door. He was frequently urinating but we had just mastered potty training and I thought it was excitement.
When his “down” behavior didn’t improve, we made a trip to the doctor. They tried to give us an ear infection diagnosis. I pushed for more. It was a Sunday, we already paid for an urgent care visit….he was my third child. I have been here before, I know what an ear infection does to him….this wasn’t it. I needed real answers. Grandma is a geriatric nurse and commented on the signs of diabetes. Her concern kept circling in my mind. It sounded ridiculous, right? He is just three. I asked the PA her thoughts. She was less than thrilled with my persistence of not agreeing with her diagnosis and she too reminded me, “he is three.” I asked what additional testing would consist of… we were already here. A cup….all he had to do was pee in a cup. Within minutes we were rushed to Children’s hospital and admitted for a 3 day stay.
We were thrown into training. Nurses, nutritionists, therapists……I learned to give an injection on a wash-cloth. That seems realistic, right? “Great job on the towel, now stab your toddler. If you don’t, he dies.” That was our terrifying reality. The same life saving medicine, insulin, can be the same thing that takes his life. Living with T1D is never easy. The constant life threat this disease carries is a very real fear in our daily lives.
Just 4 months after diagnosis we added a Dexcom monitor. This device tests his blood sugar through a bluetooth connection we put on his body every 10 days. He carries an iPod 24/7 and it sends his blood sugar readings to our phones through an app every 5 minutes. In February 2017, we were lucky enough to add an Omnipod insulin pump to help with his management. Better insulin and insulin-delivery systems, better blood glucose monitoring, better prevention and treatment of complications … this is what the JDRF family of supporters makes possible together. And more breakthroughs are on the horizon!
I knew I wanted to be involved and do what I could to help make a cure possible. I immediately jumped in the JDRF community and got involved. Our family loves walk day! We started small selling T-shirts our first year. The last three years we have hosted an annual golf tournament – Divots for T1D and we have been able to raise nearly $12,000 in the last three years hosting the tournament.
Even though we have to work harder than Kylar’s peers to keep him healthy, he’s not letting it slow him down. He is a wild and crazy 7 year old, always on the go. Thanks to decades of JDRF-funded research into new tools and treatments, Kylar—and the estimated 1.25 million Americans with T1D today—can manage T1D better than ever before. We can’t do this alone. We need a cure. Help us turn TypeOne into TypeNone!
I pray for the day I can say my son USED to have Type One Diabetes.
Please, JOIN me Kylar and the rest of Kylar’s Krew on Saturday, August 24th for the annual JDRF One Walk!”
— Alicia Buechler