It was the summer of 2010, and I was working through that terrifying time in the life of a diabetes parent: figuring out the whole “sending your kid to college” thing. I’m going to say this straight out: my awesome daughter, who had been living with Type 1 for 13 years at that point, was no blood sugar champion.
In fact, an endocrinologist we’d just recently gone to had sent me a horrible note that nearly ruined me. It said, “If you let her go off to college now and she dies of a cerebral edema, it’s going to be your fault.”
I was horrified. I sat down and wrote a story about teens and diabetes, which is still read widely by parents in the same boat. But there’s so much I didn’t know when I wrote that. And what I needed to know came from the place we diabetes parents should turn to most: adults with type 1 who have lived through all this.
I was at Friends for Life in Orlando, one of the most heralded diabetes conferences on this earth. There was session for young adults only on how to navigate college. Since I was inches away from pulling my child’s dream of going to Washington D.C. for school out from under her, I broke the rules and sat in to listen, hoping to hear I was right in what I was about to decide. I vowed to keep quiet. But as I listened to these young adults talk about college, diabetes, and how they were handling it, I realized something: it was not a cakewalk for them. They were not all model PWD’s in their college years. And yet there they were thriving.
So, I raised my hand, apologized for being there, and asked if I could read aloud that email. I did.
The room hushed at first and then exploded. Exploded with anger at the endo. With support for my kid. And with guidance for me. As it all came at me, someone tapped me on the shoulder and handed me a note they were asked to pass to me. I opened it and it read, “It’s me! Anna from camp! I’m right behind you!” there she was. Anna, my daughter’s nurse from diabetes camp a few years back, a young adult who, like my girl, was diagnosed at six. Anna became my guide in this college with diabetes thing; and she also helped me realize that the most powerful, spot-on advice I could get would come – many times– from those who have lived this.
The room’s first demand: Find a new endo – an adult one. We did. I was able to get my daughter in quickly. That first appointment (me outside; her in. After all, it was time for her to take this on), I was asked in just to ask a few questions. Of course, my first was the college one. “Would you let a person with her A1c go to college 500 miles away?” He cracked a joke about SATs and ACTs and then, fully earnest, told me that in no uncertain terms was I to stop her from going. Actually, he said, the smart move was to send her off where she wanted to be. Since she was not suffering from depression (a totally different situation, folks!) or any other medical situation that might impede life, I should not let her struggle with diabetes stop her.
Exactly what all those young adults had told me.
I realized after that, that while no one group of people are always going to be right (or wrong) about everything, adding the input of adults who have lived through this was going to better our diabetes lives.
From that time on, I took what I thought I understood and used it as a great cocktail of parenting advice. To this day, I lean on Anna when I need to be guided. (And Kerri. And Melissa. And Katie. And Sarah. And Christel. And so on.)
I recently saw a story about parents who made a difficult choice in their young adult’s life. They decided not to pay for his college education because he was neglecting his diabetes care entirely. It wasn’t the choice I would have made, but only because of that lucky day I sneaked into the session at Friends for Life, spoke up, got Anna’s note and, received the wisdom of adults with diabetes.
I read some of the comments in response to the parents’ decision not to pay for college, and one after another after another, adults with diabetes tried to explain what they wished their parents had done differently. Some shamed them for “judging” the parents. But I don’t think it was judging. I see it the same way I saw those young adults who spoke up to me (and to that endo’s note). They care, and they care a lot. And they sure know what they’re talking about.
Today that child I almost did not send away to school is a graduate with an incredible career. (How exactly we did that is another story: coming soon). She dreams of running for office some day when she is ready. And I know when she is sworn into whichever job she runs for, I’ll be there smiling, beaming, and sending out a special thank to those folks who helped me not stop her from her dreams.