And Christopher isn’t sold on the concept of balance, but instead works in pursuit of a life worth living. He said, “I don’t know that I actually seek balance. I seek health, and I want to live a long and wonderful life, but if forced to choose between the two, I’ll take wonderful. I know that in order to do that, I need to work hard and make sacrifices that other people don’t have to make in order to have a chance at avoiding the complications that come along with diabetes, as well as minimize the daily drags and dangers of highs and lows. And I know that even if I do an amazing job of ‘managing’ my diabetes, there are no guarantees. Still, my goal is to make a life for myself that I want to live, to give myself a reason to endure everything that living with diabetes demands I endure, and then live that life. For me, that doesn’t really leave room for balance. I have only one life and my life includes diabetes, so I’m going all-in with it. I sacrifice, I live, and I celebrate the life I have as best I can, and I keep trying to find new things for which I want to live. As long as I’m able to do that, I don’t worry too much about balance.”
Transitioning from a Parent’s Care to Caring for Yourself
My mom, Debbe, recalls the virus I had prior to my diabetes diagnosis, the one my endocrinologists have historically pointed to as the “trigger” that set tumbling the dominos of my diagnosis. My pediatric endocrinologist told me that my beta cells were in a ready state for type 1 diabetes, and he believed that virus is what set the wheel into motion. But the actual diagnosis? I don’t really remember it much. Diabetes has always just been there.
At the hospital, the doctors and nurses spoke mostly to my parents. My dad paced the room and looked out the window. My mom sat at the table with the endocrinologist, listening and taking notes. Books on long- and short-acting insulin, a proposed diet, and a chart to log my blood sugars slid across the table. I wasn’t paying too much attention to these attempts at education.
Pieces of fruit were offered to us as injection practice targets. “The skin of an orange is almost identical in strength and texture to that of human skin,” the nurse said, handing a syringe to my mom along with a vial of clear solution. The tip of the syringe was thrust into the bottle to draw back a few units of saline, pretending it was insulin. The needle tip was placed easily against the side of the ripened orange and then pushed inside with little hesitation.
However, when my mother placed the tip of the needle, filled with insulin, against the fleshy part of my arm, it was not so simple. This was an intrusive change, all of these now-necessary needles, but we did what we needed to do to move forward. My mom always felt that it was important for me to learn the mechanics of this process. “I felt that if you were more independent, you’d hopefully be less resentful of diabetes. Because it wouldn’t hold you back. Independence was key,” she explained.
This is probably why, when my childhood friend Jill had her sleepover birthday party in December, my mom made certain that I was able to attend … even though it was only three months after my diagnosis. I packed my pajamas, my sleeping bag, my glucose meter, and my stuffed animal Kitty. I was beyond excited for my first sleepover. My mom was slightly less excited and more nervous.
Mom stayed and administered my last shot of the day, then went home, whispering that she’d be back around 6:30 the next morning to check me and give me my morning insulin. I have a clear memory of my mother and Jill’s mother in the kitchen drinking tea that morning as we all wandered downstairs after our sleepover. It didn’t dawn on me until later that my mother probably didn’t sleep much that night, running back and forth between our house and Jill’s house to monitor my newly diagnosed diabetes.
“You did your shots pretty young, by the time you were about eight,” my mother, Debbe, recalls. “I would draw the insulin up and you would inject yourself. But then all of a sudden, you developed a fear of giving yourself a shot. We have no idea what caused it—no one’s in your head, and you weren’t telling us what your hang-up was. You just decided it was scary to pinch your skin up and put the needle in.”
I remember these moments clearly, hiding underneath the dining room table or behind the floor-length curtains to avoid being told to take my shot. Mom was surprised at my sudden recoil.
“I couldn’t understand why you didn’t want to do them, after you had already been doing them for a while,” she shrugged as she remembered those days. “I resumed the job of injecting but I hoped diabetes camp would reignite your interest.”
“Clara Barton Camp for Diabetic Girls.” The picture on the front of the brochure was of a smiling camp counselor and three little girls grinning and hugging each other. The background was a gorgeous lake and some cabins tucked between trees. My mom and I discussed this camp the year after I was diagnosed.
“Kerri, this camp is special. Every single camper has diabetes, like you. Every counselor has diabetes, too. I think even most of the other staff are diabetic. Everyone has it. So it’s easy to go and do your tests and shots and all that stuff without worrying. Right?” She avoided making eye contact, hoping she had adequately sold me on the idea.
There were other kids with diabetes? Where the hell had they been hiding? I thought about this. A bunch of diabetic kids. I’m one of them. I’d like to meet other diabetics, so I didn’t feel like I was alone. For several weeks, I was excited.
Then excitement gave way to panic as I thought about all these people I didn’t know and how I was going to be living alongside them for the next two weeks. Mom and Dad drove me to camp, met my counselor and my fellow campers, chatted with a few parents, and then prepared to leave.
“Mom, I don’t want to stay here.” My chin trembled.
“Honey, listen. This is going to be so fun. I don’t know any other kid who gets to spend part of her summer with other diabetics and having a ton of fun. Did you see the archery field? And the lake? It looked like they had a very cool arts and crafts building, too. And the dining hall is huge! I bet there will be food fights!”
I smiled a little bit, still nervous. I had no idea, though, just how nervous my parents were, giving me and responsibility for my diabetes over to this camp for almost two full weeks.
Clara Barton Camp turned out to be the most incredible experience of my young diabetic life. The campers were all diabetic, as advertised. There wasn’t a person there with whom I interacted every day who wasn’t also checking their blood sugar and taking their insulin shots. It had such an intense sense of community—of family—that the memories of camp still bring a smile to my face, even 20 years later.
That feeling of “normal” was a huge part of growing up with diabetes, because it kept my disease in the background instead of giving it center stage. My parents, my mother in particular, were always careful to make sure that diabetes wasn’t something for which I was singled out, even though it was still on their minds.
“The fact that you went to Clara Barton Camp from the time you were diagnosed until you were too old was a blessing in that I was able to hand over the responsibility of your medical care to a very capable and trusted staff. I looked at sending you to camp as a benefit to everyone in our family. You could bond with children who dealt with the same issues you did on a daily basis. You guys could complain about how over-protective your parents were and that we don’t understand what it’s like.
“Because it’s true—we don’t understand what it’s like for you. But as a parent, my children