MB: I had a knowledge of it, but my knowledge was basically based in the 1970s and ’80s. I’m kind of wowed by it and I look back at my grandmother, who had multiple kids with diabetes so long ago when there wasn’t even blood glucose testing. They were peeing in vials that would change color and they had one kind of insulin.
I was very familiar with it, but they were all so independent. Everybody ran high because you didn’t know what your blood sugar was at any given point in the day, so there weren’t a lot of low blood sugars. It was a lot of high blood sugar and complications. When Jesse was diagnosed, I didn’t know as much as I should have, but it was different. The insulin pump was a new thing, and it was hard to get him on it when he was five. I had to fight to get him on a Medtronic pump. CGMs just weren’t a thing yet; it was just a lot of finger pokes, and regular and NPH insulin back then.
Can you talk about what losing Jesse was like?
Take it back to 2010: I was very active in the diabetes community, and back then, nobody talked about people passing away from Type 1 diabetes. Our diabetes educators never really talked about it being a possibility. All I ever heard was, “Oh, they’re fine. They’re going to live a healthy life. Don’t even worry about it.”
When he passed away, it was very sudden and unexpected. I was known enough in the diabetes community, from the documentary, that people knew who I was, so it put everyone in kind of a panic. That if this could happen to my family, it could happen to theirs. In the early days, the panic went the wrong way. People didn’t want me talking about it, they thought I was scaring the newly diagnosed families, and it wasn’t a very well-received conversation.
Aside from the obvious unfathomable sadness when I lost him, there was this feeling of dread – I thought I was going to lose my community. I’d spent so much time working in diabetes and all my friends either had Type 1 diabetes or their kids had Type 1 diabetes. I was thinking, “Well, who’s going to want to hang out with a mom who lost their kid to a disease their kids have?”
What happened was actually the exact opposite. My friends really rallied around me. They wanted me at events. They wanted me to talk about Jesse. I felt that the piece that was missing for me was wanting to know other people who were going through what I was going through. I started reaching out to other people and talked more and more about my loss, and slowly but surely, started the Jesse Was Here network. I just found it was really cathartic to talk to these other people who understood, who’d been in my shoes, and could relate to my pain.
Is it hard to be constantly reminded of Jesse through the work you do + how you cope when those feelings come up?
What I’ve learned over the 10 years is that everybody grieves differently. My way of coping was to talk about him constantly. I found the more I talked about him and being involved with other people, I felt like he was living on in my life. People just want to feel like their loved one is still part of their lives and people don’t forget them.
It was very cathartic. When I look back, I went from coping to healing without even realizing it. Because I was coping every time a new mom called me that had lost their child and I would sob. I would stand in their shoes, I would feel the pain all over again. Now, it’s more of helping and healing. I don’t have to go back to that day every time I talk to somebody who’s lost, because now part of my healing is helping other people. But there are always days where I see a little boy who looks like Jesse or the smell of insulin sometimes gets me.
What are other ways you’ve commemorated Jesse’s memory?
Just weeks after he passed, I got an essay by him in the mail from a teacher. I was feeling really distraught, feeling sorry for myself, and trying to figure out what my path was going to be outside of diabetes because diabetes was no longer in my life. The essay could have been about anything he wanted, and it was just called, “My Mom is Courageous.” He had detailed everything that I had ever done for him in diabetes. He had detailed all of these things that he was proud of, like Ride to Cure Diabetes and Ironman. I knew, right then and there, I would continue on the Ironman route. I created the Riding On Insulin Endurance Team, where there were 63 of us who did Ironman Wisconsin. 36 of our teammates had Type 1, which was probably one of my coolest moments.
Every year since he’s been gone, we have a rock concert called Jessepalooza, where we get local bands together and do auctions. It’s really an excuse to get together, to celebrate him. He played guitar and he played drums. We do that every summer, and we’ve had 10 of those.
I was very involved in the JDRF Ride to Cure Diabetes when Jesse was alive. The year he passed away, I decided to go back to Death Valley, California and ride in his memory. The JDRF Ride Director, Aly, and the coaches at the time knew me very well, and they advised me that mile 23 was going to be a mile of silence from then on, in memory of Jesse; they came up with 23 because he died on February 3rd. And so Mile 23 has morphed into this amazing thing, where at the beginning of the weekend they talk about how there are 99 miles, to celebrate all that we’ve done towards a cure for Type 1 diabetes, but there’s one mile to remember those we’ve lost. It’s meaningful to way more people than just my family; it’s in memory of everyone.