Just My Type: Craving Support in Raising a T1D Child in the Berkshires
Happy Anniversary to Us
I remember clearly my daughter’s last carefree moment of childhood… Noelle was 4 years old, and my husband and I had picked her up early from preschool on a Friday to bring her to the doctor’s office. I found her playing in the classroom, absorbed in a game of blocks. When we called for her to get her things to come with us, she ran to us, calling to her friends over her shoulder as she left, “I have to go now. I have to go the doctor. See you Monday!” She said it with the innocence of a child not knowing her life was about to change in ways none of us could imagine.
The date was Oct. 1, 2010. I remember it as if it were yesterday, even though we just marked the two-year “anniversary” on Oct. 1, 2012.
Hours after leaving her preschool, Noelle was diagnosed with type 1 diabetes. Her blood glucose was 550; normal blood glucose is 70 to 120. Luckily, we brought her in when we did and she was not in immediate danger, and after a trip to the emergency room for the first insulin shot of what already has been hundreds and what will be thousands more, we were sent home… It was the worse night of my life.
Until the next night, after a day spent at Baystate Medical Center learning how to keep my child alive, when the four-times-a-day shots started… Until the next night, when the exhaustion and tears of the day before caught up with all of us and the reality of the situation sank in… Until every single night – and day – after that, for the last two years, 24 hours a day, seven days a week filled with carb counting and finger pricking and insulin shots and watching and waiting and worrying that tomorrow morning will be the morning Noelle doesn’t wake up.
So far, she has woken up with a smile on her face every morning, handling the reality of her life better than anyone could expect.
I wish I could say the same for me. Living in the Berkshires, support has been scarce. There is no support group for children with diabetes or their parents. There is no local network, no local organization, no local connections. Last year we did a diabetes walk in Albany, NY; this past weekend, we walked in the JDRF Walk to Cure Diabetes at Six Flags New England in Agwam, MA. I have met and occasionally talked to the mother of the only other child in our town of Williamstown with diabetes.
I crave that support, so much so that I subscribe to a couple of diabetes blogs, though I am not typically a blog reader and neither of those families are local, either. And I recently put aside my nervousness about talking to a stranger when I heard the mom behind me at Gymfest of the Berkshires say to her daughter, “How does your sugar feel?” I turned to her a moment later and said, “Does your daughter have diabetes?” What followed was an hour-and-a-half conversation with her during open gym about her life of diabetes management, with her keeping her second-grader alive and me keeping my first-grader alive.
Because in the end, that’s what it’s about: keeping our children alive and as healthy as we can, despite this horrific disease that has no cure in sight, that steals children’s carefree lives on a daily basis and that steals their actual lives more than I want to admit.
Two years ago this month, my family’s lives changed forever. Noelle never will have that carefree childhood again, and there are days I want to just scream and hit someone or something over the unfairness of it all. There are days I still cry for no reason; I actually broke down in church a couple Sundays ago when Noelle had to sit in the back and eat a package of Smarties to bring a low blood sugar up during the homily. There are days when the gravity of the situation makes me want to curl up and die.
But there are days when I feel I can do some good, like educating one person who doesn’t understand type 1 diabetes, or like raising money for the walk at Six Flags, or like someday starting that support group that’s missing from our area.
Starting our third year of living with type 1, I hope to have more of those kinds of days.
ABOUT THE AUTHOR
Pittsfield native Rebecca Dravis is a former journalist who lives in north Berkshire County with her husband and daughter in Williamstown, MA. This is the debut of a monthly column where Rebecca will share her experiences as a parent raising a child with type one diabetes. – Check out Just My Type on the third Monday of every month.
What is Type 1 Diabetes: Type 1 diabetes (T1D) is an autoimmune disease in which a person’s pancreas stops producing insulin, a hormone that enables people to get energy from food. It occurs when the body’s immune system attacks and destroys the insulin-producing cells in the pancreas, called beta cells. While its causes are not yet entirely understood, scientists believe that both genetic factors and environmental triggers are involved. Its onset has nothing to do with diet or lifestyle. There is nothing you can do to prevent T1D, and-at present-nothing you can do to get rid of it. [Source: JDRF]