We recently asked our Facebook and Twitter communities to send us their stories—specifically, what it’s like to be the parent of a child living with type 1 diabetes. Having received a lot of wonderful stories, we’re excited to present these favorites on the blog every week.
We hope you’re as inspired by these personal stories as we are, and that you’re willing to keep the conversation going. Tell us more in the comments!
Name: Stacey & Benny (@staceysimms)
Location: Charlotte, North Carolina
Benny was diagnosed in December 2006, just before he turned 2. Now he’s 10 years old, and we’re about to mark nine years of living with type 1 diabetes. We didn’t know anyone with type 1 in our family, but a few years later, a cousin was diagnosed.
When your child is diagnosed and he’s too young to even pronounce “diabetes” properly, the motivation is clear. It’s completely up to you to keep your child safe and healthy. We wanted Benny to live as normal a life as possible and to grow up with the idea that diabetes would not keep him from anything he wanted to do.
It was also important to us that our management and teachings about diabetes come from knowledge and experience, not from fear. I sometimes have to work hard to not let fear and worry take over. I remind myself that my goal as a parent is to make my children independent, confident and responsible.
Over the years, we transitioned more and more care to Benny, to the point where now he can be very independent. However, we are mindful of the mental burden and the potential for burnout, so we still help out quite a bit. I recently gave him a “diabetes free” day where I did everything. I didn’t even tell him his blood glucose numbers or the carb counts in his food. He had just come back from sleepaway camp, so I think he really appreciated having a break from diabetes management. I’ve offered another “free” day whenever he wants.
I think there are always challenges for kids with chronic conditions like diabetes. We want them to stay healthy, to stay safe and to also get a good education, make friends and pay attention in class. Mostly, they just want to go to school and not draw a lot of extra, unwanted attention to themselves. That’s a tough balance! I’m thankful our school staff has always worked with us and respected our wants and needs. Benny was the only child with type 1 in the school for kindergarten and first grade, but now there are four students, all of whom manage with different devices and different styles.
My advice to other parents with newly diagnosed children is to first take a deep breath. Remember that your child is unique. Connect with other diabetes parents in your area. However, I’d also recommend you connect with adults with type 1. When Benny was diagnosed, meeting healthy, happy adults with diabetes (even online) helped me picture him all grown up and doing great. Their perspective is very valuable. Although there is a lot of help and advice available on social media, often only the most dramatic situations get attention. That means you’re seeing the best and the worst, not necessarily the everyday.
I wrote a blog post recently about the different between trying to stay positive and trying to be perfect. The parent sets the tone, and I don’t want my son walking around in a gloom-and-doom cloud of fear. But diabetes is hard. It’s always there and if you ignore it, it just makes things worse. It’s a giant pain and it’s important to acknowledge it. I also don’t want anyone feeling bad for my son.
If you deny the frustration and sadness that comes along with a chronic illness, you don’t do yourself any favors. But if you also deny the joy you still have, you’re missing out on so much more. Be joyful. Enjoy your child. Life with diabetes isn’t what any of us wanted.
But when I watch my son crush a baseball in the playoffs, or receive a funny letter telling me he’s having a great time at camp or watch him happily crash on the couch after a sleepover at a friend’s house (where no one really slept), I smile and remember life is so much more than diabetes. Life is good.
The American Diabetes Association’s Safe at School campaign is dedicated to making sure that all children with diabetes are medically safe at school and have the same educational opportunities as their peers. To learn more, visit http://diabetes.org/sas.