I met Perry at a neighborhood Food Co-op four years ago when he noticed my jacket’s JDRF (Juvenile Diabetes Research Foundation) emblem, introduced himself, and asked if I knew of any diabetes support groups. His three-year old son, Max, had recently been diagnosed with type 1.
Two years later we met again, this time in his living room. I had called to say that I was writing a book about people’s stories of living with diabetes, and he invited me over. I had no idea how moving his story would be.
9/11: The World Crashes In
“We took Max to our pediatrician on Monday, September 10th,” Perry says. “The doctor did some tests and told us Max was fine, but my wife and I knew that something was wrong. If you’re going to send us home, we said, we’re going right to the hospital. The doctor then had Max pee on a strip and said, ‘I think he could have diabetes.'”
Max was admitted to Colombia Presbyterian Hospital that day. The next morning, two planes crashed into the World Trade Center. “Out the hospital window, all day,” Perry says, “I could see the World Trade Center towers burning. Late that night I’m walking in and out of the lounge with Max in my arms, trying to get him to sleep, and the TV kept re-running the towers collapsing. I felt like my life was collapsing.”
“We were so lost in this new world. Columbia Presbyterian has a renowned diabetes center, but we didn’t get the information or support that we needed,” Perry says. He and his wife, Jena, came away from those four days in the hospital exhausted, scared, and searching for information.
Perry, a professor, and Jena, a therapist, set about managing Max’s diabetes like any major project – they researched, analyzed, optimized resources, and made informed decisions. Early on, Jena found another mother on the Internet with whom she could share experiences and emotions. The couple wrote a letter for Max’s kindergarten teacher to send to his classmates’ parents, and Jena gave a talk to Max’s class. They fought the Board of Education for weeks to get the nurse they were entitled to; she now checks Max’s blood sugar at school and accompanies him on school trips. “The other kids were curious at first,” Perry tells me, “but now they completely ignore it.”
Testing Eighteen Times a Day
Perry and Jena test Max’s blood sugar as many as eighteen times a day. “At times I feel guilty around other parents because we check so often. But Jena and I agree that this is the best way to control Max’s blood sugar as he transitions onto the pump and to avoid complications down the road.”
At a diabetes conference the couple attended, a researcher pointed out that people who test their blood sugar four to six times a day tend to get an A1c between 8 and 11%; six to eight times, 6.5 to 7%; and eight to ten times, 6 to 6.5%. Max’s last A1c, Perry proudly tells me, was 5.6%.
“Max was, and continues to be, unbelievably accepting of his diabetes. A few weeks ago,” Perry tells me, “he said, ‘You know dad, at first I wasn’t so crazy about having diabetes, but I’m getting to like it more and more.'” When I look surprised, Perry tells me Max likes his new pump and fanny pack, and he’s happy to be injection-free.
A New Closeness With Max
Perry was told early on that for some parents, caring for a chronically ill child becomes their whole identity. “It definitely has become part of my identity,” says Perry. “If Max were cured today I’d love him just as much, but in some ways I feel this is my mission in life, to keep my boy safe and healthy. Caring for my family, being able to say I kept my kid alive another day, and my work, that’s more than enough for me.”
Healing Words From a Caring Doctor
When I asked Jena my first question, she burst into tears. A minute before she had seemed so calm, but she was carrying the world on her shoulders. “I’m more emotional about this whole thing than Perry is,” Jena says through her sniffles. “I worry more about the future. I worry that Max is going to die in the middle of the night of low blood sugar. It never entered my mind that this could happen. At first I didn’t know anything. Now, I’m practically an endocrinologist.”
The couple was lucky. Max’s endocrinologist in the hospital was extremely knowledgeable and compassionate. “Every time I had to give Max an injection the first few days,” said Jena, “I would have an anxiety attack. I was out of my mind about hurting him. Our endocrinologist said something the first or second day that I held onto like a mantra. She backed me up against a wall and said, ‘We do not feel guilty about keeping our children healthy.'” At this point Jena could no longer hold back the tears. “I put that in my head and I kept it there.”
Handling the Everyday Realities
“At the beginning of the school year, getting Max a nurse was a huge battle with the Department of Education that lasted weeks. On paper, we were given a nurse for Max from the Board of Education, but no one actually showed up. I played nurse for months sitting outside Max’s classroom. Sometimes I had a client here and had to run out of a session to get to school. Once the nurse was in place, thank goodness, things pretty much got back to normal.”
It is clear that both Perry and Jena set the bar extremely high for themselves. “I never feel we take care of Max’s diabetes well enough – maybe well enough, but not really well. When there’s no perfect, you think you can always do it better. I think I should be able to handle everything,” says Jena. “Maybe now, I’m learning to ask for help, a little.”
Jena is more fearful about what kind of life her son may have, and she thinks Perry is crazily optimistic when he points out all the advancements in recent years. But they both say their strength comes from working as a team and just holding on. I think it comes from their willingness to discover and to do what it takes to give their son the best chance for a long and healthy life. Seeing the sunlight stream in the windows behind them, I know how far the two of them have come in three short years.
Lessons Learned: A diagnosis of diabetes can turn life upside down, but we can right ourselves, finding in the process more strength, more capability, and even more grace than we thought possible.
Question for reflection: What one step can you take today to manage your, or a loved one’s, diabetes even more effectively?
The names in this article have been changed.