The sun cast shadows over my 4-year old as she slept curled in a fetal position by the sliding glass doors. “A perfect picture,” I thought as I froze that moment in time with my camera. I did not know that image would forevermore bring a feeling of sorrow to my heart. Within hours of taking that photo, my husband and I were on our way to Children’s Hospital in Boston after her positive diagnosis of type 1 diabetes. I was six months pregnant with my second child, a boy, and our life was about to change forever. We spent a week in the hospital with Devyn to learn how to care for her going forward. A few weeks later, Ian was born. He was premature, but healthy.
Fast forward two years later . . . Ian had slept unusually late one morning. After breakfast, he claimed to be tired again. I felt an uneasy feeling growing in the pit of my stomach. Something had seemed off to me for a couple of weeks, but there were no definitive signs. I didn’t want to do a finger poke to draw blood, but my anxiousness won out. Ian’s blood glucose was over 300. We were fortunate to catch his diagnosis extremely early, and Ian was pumping (along with his sister) within four months.
My first introduction to JDRF was when we received a Bag of Hope for Devyn shortly after diagnosis. I vaguely remembered seeing the “boots” being given out at stores after a donation, but having no previous family history, I was clueless about type 1. The Bag of Hope, followed by several calls from JDRF volunteers, made us feel like we weren’t alone in our battle. Gradually, I have become more and more involved with JDRF and its cause to raise funds for research to find a cure.
I signed up for our first JDRF Walk to Cure Diabetes in Boston a year after Devyn was diagnosed. I was hesitant . . . how could I possibly raise enough money to make it worthwhile? I originally set a goal of $200 and donated half that amount to myself so that I was assured to reach my goal. With my husband’s help, we raised $5,000 our first year! Each year we have walked, we have increased our goal slightly, and last year we raised nearly $12,000 for research. I hope to match or exceed that amount again this year.
I became involved with the Bag of Hope program as a volunteer to meet with newly diagnosed families. This is one of the programs I enjoy the most. I remember the feelings of sorrow, constant worry, being overwhelmed and fatigued. It helped me to see other families with children who were active and happy, and I like being able to show newly diagnosed families that they are not alone.
Two years ago, I was asked to sit on the JDRF Boston Gala Committee, and I am looking forward to becoming involved with the Gala again this year.
Early on, people would say to me, “This will all be normal in no time.” To me, giving shots and finger pokes, changing infusion sets, weighing and calculating every morsel of food, and being nervous to see your child fall asleep will never be normal. It is routine, yes, but it will never be normal. This is the constant motivation for me to spread awareness, educate and raise research funding to find a cure for my children and all the others like them.
Jonna is the Team Captain of Dynamic Diabetic Duo in the Boston Walk to Cure Diabetes.