Mollie Busby "married into diabetes" on September 24th, 2011, when married Sean Busby, a pro backcountry snowboarder living with type 1 diabetes. Mollie is the Executive Director of Riding On Insulin, a nonprofit organization that hosts action sports events for kids and teens living with type 1 diabetes, and writes a blog called The Mollie Shambeau Show that chronicles her adventures around the world with Sean. Read full bio

Finding Hope in the Diabetes Online Community

As the wife of a man with type 1 diabetes, there have been a lot of firsts for me in the past three years.

In February 2010, when I first met Sean, watching him calibrate his pump, prick his finger and come up from a low, made me think I’d learned what having type 1 diabetes meant. Then in July 2010, I actually learned what type 1 diabetes meant after Sean and I both got a horrible case of food poisoning in the Cook Islands and I had to prick his finger, help make some quick decisions and get him to the local hospital and advocate for an overnight stay because of his diabetes. He shared a hospital room with some local lizards—yep, that happened.

In the spring of 2011, I wanted to feel what it’s like to be attached to a pump, so I did a saline insulin pump trial. Then, this summer, I was fed up with not knowing what goes on inside Sean’s body and I decided to pursue my master’s in dietetics to eventually become a certified diabetes educator. I made it through the Organic Chemistry (barely) and now I’m engulfed in Biochem and Microbiology, learning all about what the cells of a type 1 diabetic do and how that affects the person living with the disease. For me, learning those things, wearing a pump for a week, and getting my degree is the closest I can come at this point in my life to “truly” understanding what my husband goes through.  Still, I don’t really know…

Recently, I dealt with another “new” for us. Finding a good endocrinologist. Don’t we all struggle with this? Add health insurance regulations into the mix and the whole process can become extremely disheartening. I’m not here to make a political statement—but rather I want to comment on how I learned (quickly) how to navigate the system. The key? It’s all about support. There are these Facebook support groups filled with (mostly) moms and dads with kids who have type 1 diabetes. It’s not like WikiAnswers or Yahoo Forums where you put up a question and have no clue who will answer. This time, you know exactly who will answer. It will be a mom, or a dad, or a PWD who knows exactly what you’re going through. Within the hour after I posted that Sean and I needed to find a great endocrinologist in our area, I had a list of providers who our insurance approves and a few pending appointments scheduled. Situation managed.

With communities of 400, 800, 1500, or even 2000 members, these groups provide the powerful connections people like us need to survive in this world. What’s more than connection is hope. I am ever-so-hopeful for the future of the diabetes online community when I read the posts in those Facebook groups. Parents of children with type 1 diabetes: You are amazing. To those with type 1 diabetes: Your perseverance is incredible.

No matter what our connection to type 1 diabetes is, we in the diabetes online community have to stick together in this world… and it feels less lonely to be in good company, doesn’t it? 

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Riding On Insulin—Through my eyes

As you may know, I am the executive director Riding On Insulin—a nonprofit my husband Sean started when he was diagnosed with T1D at age 19. What may NOT know is what exactly goes on at our ski and snowboard camps for kids and teens living with T1D. Riding On Insulin is such an powerful weekend for all who attend, and I want to write about it here because I think so many are probably curious about what exactly Sean and I do when we “go to camp.” Do we sleep in tents? [No.] Do we have a campfire? [No.] Do we have an incredible day skiing and riding with resilient kids and teens living with type 1 diabetes? [Yep. Every time.] 

Sean & Mollie - Snow Planet, New Zealand

Sean and Mollie talking to the crowd at our 2nd annual sold out camp at Snow Planet, an indoor resort outside Auckland, New Zealand

In in honor of curiosity, this is what a Riding On Insulin camp is like through my eyes.

Orientation takes place on Friday night and lasts about an hour and fifteen minutes. Parents take their seats at the tables—some with huge smiles on their faces, some looking a little like deer-in-headlights. Kids look around nervously, wondering what the following day will bring. Others smile at those they recognize from other camps they’ve attended. We proceed with the program, explaining what to expect the following day, and answer the inevitable onslaught of questions, from both parents and volunteers.

The real fun begins Saturday morning. Volunteers arrive around 8:30am and get their briefing on what group they have. They develop coaching plans, stuff their pockets with glucose, and fire up the walkie talkies. Then the first families arrive, having dealt with the stress of getting breakfast, getting to the resort, and getting their rentals. Sometimes I look at the moms and dads and think—Wow, you look like you need a break. [And then I grin because that’s exactly what they’re about to receive today!] Once we do a group check, everyone grabs their signature Slin armband (which signifies that they’re with our group), and we divide them up and send them out to ski/ride with their coaches.

And then there’s this moment of pure chaos for me.

Everyone is out of the building, all the groups are accounted for, and there I am… waiting. I wait for someone to radio me. I wait for someone to need something. And because I’m not good at waiting, I head out to the bunny hill to observe the beginners. Before I know it, it’s time for groups to do their second check of the day. Sometimes the meters are too cold, so I carry a spare meter with me (as do all of our coaches) and help out the kids when they have meters that won’t deal with the cold.

Riding on Insulin Volunteers

Connected In Motion: Riding On Insulin Volunteers at Nakiska Resort, March 2012

The second blood check is done. Everyone is where they need to be, and all the groups have checked in. You know the greatest thing about this part of the day? The confidence I have in the volunteers. They are some of the most capable, fun-loving people I’ve ever met—many of whom have diabetes themselves. They are so immediately passionate about our program… I am so fortunate to work with such amazing people.

We have lunch from about 11:45 to 12:30, and then more skiing and snowboarding. My role throughout all of this is a floater. I check in with groups, and admittedly spend a lot of time on the bunny hill—the beginners are so inspiring… having never set foot on a board, they fall, and they fall and they fall. And yet every time, they get up, march up the hill (or attempt the magic carpet/poma lift/chair lift, depending where we are) and do it all over again. When I tell them we’re having a testing party [and they’re invited] they grin at me, plop down on the snow and test their blood sugar. Just like that. If they get a number they’re not comfortable with, they head in the lodge to figure things out with the volunteer medical staff. Otherwise, they just keep on taking the same run over and over—getting better and better every time. I think we can all learn something from that, no?

And the parents? Oh, they are relaxed as ever. Some relax in the lodge, reading that book they’ve been wanting to get into. Some are out on the mountain, checking in with their kids’ ever so often. Others hover at the base of the bunny hill, watching with amazement at their kids—they tell me, “I can’t believe my child can do this!” That part is pretty awesome.

Around 4:00, we do a group picture, and I swear to you: The change that takes place from Friday night to Saturday afternoon is incredible. It’s like night and day. The kids who were once quiet and subdued are the ones throwing snowballs at new friends and running around being kids for once, and not kids with diabetes. The teen who thought she would never learn to ski, skied all day and is beaming with pride. And, the volunteers that gave me a wide-eyed look in the morning are laughing, and smiling (and admittedly exhausted), so glad they agreed to spend the day with Riding On Insulin.

It’s a win-win for everyone.

Sean gives a presentation after a dinner buffet, around 5:30, and from then on it’s smooth sailing for me. My part—the organizing part—is over, and I’m free to eat my dinner and listen to my husband tell the crowd about his crazy diabetes diagnosis story. He shows photos from all the expeditions he’s been on, and answers questions from families about how he manages diabetes in extreme environments. At this moment, I feel so proud of him—not only for starting Riding On Insulin eight years ago, but for having the courage to be open about his diabetes. Not everyone wants, or needs to announce their diagnosis story to the world. But Sean tells it with poise and humility—it’s part of the experience. He tells it without asking anything in return, other than the chance to connect with others. I am continually humbled by his ability to do this. For him [and for me], it’s really, honestly all about the kids.

By 8pm, I cozy up to a glass of wine, with a goofy grin plastered on my face. We did it. Another successful camp. I literally have the best job in the world.

For more information about Riding On Insulin, visit http://RidingOnInsulin.org.

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Never Stop Believing

Mollie & Sean on skilift

by Andrew Meehan Photography

Greetings to friends and fans of A Sweet Life! I’m Mollie Busby and I am married to Sean Busby, a professional backcountry snowboarder living with type 1 diabetes. I don’t have diabetes, myself, but I spend my days supporting Sean and running our nonprofit organization, Riding On Insulin

Before I blog about the here and now, it’s important that I spend this first post explaining how Sean and I met. Our journey has had many twists and turns, and even now—after the engagement and the wedding and getting a nonprofit started in a rough economic climate, we’re continually amazed at how life brought us together to fulfill such a meaningful purpose for the diabetes community.

 

So, the story! Lets start at the beginning…

I nabbed a job immediately after graduating with my journalism degree from the University of Wisconsin-Madison. I was stylish, I was savvy, and I was on top of the world as a successful style editor at a regional magazine in Madison, Wisconsin. I didn’t have a care in the world other than what outfit I would put together each day. 

In February 2010, my life turned upside down. My colleague and dear friend, Michelle Page-Alswager, unexpectedly lost her son, Jesse Alswager—at age 13—from complications with type 1 diabetes. It was the first time death had touched my life at such close proximity. It was also the first time I stopped to actually consider the implications of living with a chronic disease. I knew nothing about T1D other than it could happen to kids, and there were people riding bikes to raise money for a cure.

Sitting there at the hospital, I contemplated my few, trivial meetings with the young boy. Having had such a demanding disease at such a young age, I knew Jesse was to be commended for taking each day in stride, while also serving as an advocate for diabetes. I made up my mind to honor Jesse’s life, but I wasn’t sure how.

Three days later, the answer sat right in front of me.

I was sitting in a pew at Jesse’s funeral, listening to a Dave Matthews song called “You and Me” play in the church. I remembered Michelle had told me that a few days before Jesse died that he begged her to download it. She obliged, and thus will forever hold a special affinity for the song. Once the service began, a young man in front of me stood and walked to the podium to give a eulogy. Sean Busby, a 25-year-old professional snowboarder with type 1 diabetes and a dear friend of Jesse’s, explained to the crowd how Jesse, even at age 13, had saved his life. After Sean was diagnosed with type 1 diabetes at age 19, it was little Jesse (who loved snowboarding) that inspired Sean to continue his own snowboarding career. Jesse was Sean’s biggest fan, and Sean thought of him like a little brother. Jesse also inspired Sean to start Riding On Insulin, which he founded to host ski and snowboarding camps for kids with T1D. His goal was to show kids—similar to how Jesse showed him—that diabetes doesn’t have to limit anyone. Sean explained that Riding On Insulin had been on hold recently due to professional commitments, but he was determined to start it up again in Jesse’s honor.

I was moved to tears.

That evening, a group of us went out to dinner to celebrate Jesse’s life. Sean and I hit it off, and began an unexpected relationship that grew into love faster than either of us imagined possible. Five months later, I moved across the country to be closer to him, and on March 15th, 2011—just over a year after we’d met—Sean got down on one knee and proposed to me in Iceland at Godafoss, “Waterfall of the Gods.” The song that shuffled onto my iPod after the proposal? “You and Me,” by Dave Matthews—a reminder that Jesse is ever-present in our lives. 

During the short time we’ve been together, Sean and I have fulfilled each of our goals we set after Jesse died—I, honoring Jesse’s life, and Sean, restarting Riding On Insulin for Jesse. Riding On Insulin is now a promising 501(c)(3) nonprofit corporation with over 15 camps planned for the 2012/2013 season. The organization is seeing incredible support in five countries, and we couldn’t be more hopeful for the future.

We have been fortunate to have continual reminders that Jesse is watching over us, helping to guide us on our journey. After our engagement in March, we discovered that, unbeknownst to us, we had planned our wedding for September 24th, 2011—a date that would have been Jesse’s 15th birthday.

That day I walked down the aisle to one of Jesse’s other favorite songs: Don’t Stop Believing, by Journey. It’s an anthem that finds its way into our lives at the most unexpected moments—in a restaurant, in a waiting room, in the car on the way to a Riding On Insulin camp. Rather than chalk it up to coincidence, Sean and I embrace the circumstance and nod to Jesse, thanking him for sticking by our side.

Mollie&Sean - Married to Diabetes

by Leah Aubrey Photography

 

The past two and a half years have been one whirlwind of change for me. Sean and I keep friends and family on their toes with each new adventure we pursue, from driving a vegetable oil-powered motorhome to Alaska, to honeymooning in Bulgaria and Romania, to hosting Riding On Insulin camps in 5 different countries. Life hasn’t slowed down since Jesse brought us together, and above all else, we continually remind ourselves to never stop believing in what we do. That’s what Jesse would have wanted, and we couldn’t imagine life any other way.

Mollie Busby writes a lifestyle/adventure blog called The Mollie Shambeau Show.

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