Eight years have passed since Michelle Page-Alswager in Wisconsin lost her son Jesse to type 1 diabetes, but his legacy lives on in her heart and throughout the Diabetes Community -- and Jesse's story is now the foundation of a new non-profit program for grieving families who've lost their own loved ones to diabetes. It aims to offer peer and community support, but also create a legacy aspect to eventually fundraise for headstones as well as pay off the lingering medical debt of those who are gone.

Launching on National Grief Awareness Day on Aug. 30, the new program called "Jesse Was Here" is being created under the umbrella of California-based advocacy org Beyond Type 1, with Michelle Alswager at the helm.

"She is the spark for this program," Beyond Type 1 leader and D-Mom Sarah Lucas says about Alswager. "This comes at just the right time, when there was not even a moment to consider not moving forward with this. Our whole team feels that this will be a very special program... to fill a gap and make a difference in providing comfort and support."

For those who've never met or heard Michelle's story before, she's a passionate D-advocate who has made countless ripples within the Diabetes Community over the years. But it comes with heartbreak and tears, and as much good that's come from her son's legacy to date, of course we wish it never would have been necessary in the first place.

 

Honoring Jesse Alswager's Life

Jesse was diagnosed at age 3 in 2000, and pretty quickly D-Mom Michelle jumped into the deep end of the Diabetes Community. She became executive director of her local JDRF chapter in Wisconsin, organized “Triabetes” that involved 12 people doing an Ironman triathlon challenge, and supported various Ride for the Cure events. But around the time Jesse was 11 years old, he told her to please “stop talking about diabetes all the time,” so she went to work at a women’s magazine. Soon after, Michelle met adult-diagnosed PWD and professional snowboarder Sean Busby, who'd created a diabetes snowboarding camp for kids. They started working together at non-profit Riding on Insulin, and of course Jesse participated and loved it.

Then, everything changed on Feb. 3, 2010.

Jesse was 13 years old, and suddenly he was gone as a direct result of type 1. Michelle says that Sean gave the eulogy at Jesse’s funeral and met her co-worker Mollie, and they ended up getting married on what would have been Jesse’s 15th birthday a couple years later. Over the years, Michelle shared her story throughout the community and has become a voice for those who’ve faced this same heartbreaking, worst-case-scenario of sudden death in bed. 

“Always in the background of his death for me, aside from it being the most horrific thing a mother can ever go through, was that I didn’t just lose my son that day, but also I had this fear that I was going to lose my community,” she tells us.

"Nobody was talking about kids losing their lives to diabetes and there weren’t a lot of doctor's telling parents about (death) being one of the worst side effects," she says. So she began to devoted herself to raising awareness and sharing her story.

Of course, she didn’t lose that support community.

 

Support for Newly Grieving Families

Michelle’s name has been quite visible around the D-Community, from her work at Riding on Insulin, to her blog posts, to joining Beyond Type 1's leadership council, and most recently in June 2018 her joining the Diabetes Daily team as sales director. 

Every year since 2010, she's held an annual remembrance called "JessePalooza," which is not only designed to "celebrate the life of a cool kid" but also give the community a way to rock out and raise money for charitable diabetes causes. It's raised over $150,000 for JDRF, Riding on Insulin, and Beyond Type 1 over the years and their most recent event in July 2018 brought out more than a 1,000 people donating $10K this year alone. Wow!

Importantly, however, Michelle tells us that over the years in connecting with others who’ve lost people to T1D, she's realized that a much-needed infrastructure of peer support for these grieving individuals was lacking.

“I realized parents who have lost don’t have that,” she says. “They might be alone in California or alone in New Zealand dealing with their grief and loss. So I brought together this community of hundreds of people on this Facebook group, just so they could find another person who’s standing in their shoes.”

While local bereavement groups exist, Michelle says everyone’s story is different and that someone who’s lost as a result of type 1 diabetes is different from someone who died in a car accident or something else. She wanted a community specific to T1D loss -- where those who lost someone years ago might provide newly-grieving families a window into what may be ahead, and learning to accept that "I shouldn’t feel guilty to feel joy, and that I can just live my life.” 

In Spring 2018, Michelle took the idea to Beyond Type 1 for consideration because she’d been working with the non-profit on other projects and programs. The connection was immediate. Michelle says Beyond Type 1 was a natural fit for this program, because they served almost as a "community microphone" in amplifying DKA awareness and addressing these toughest issues of death from T1D. "It was a no-brainer," say both Michelle and BT1 head Sarah Lucas says about the partnership.

"There's this whole group of people in our community who are almost invisible, and they are just floating out there," Sarah says. "People either don't want to acknowledge that they've lost someone to a T1 death, or there are those who were never a part of the community because their loved one died before being diagnosed. We were seeing all of these stories bubbling up, but they didn't really have a home. There is so much more need, and our hope with this full program is to provide that."

 

What "Jesse Was Here" Does

In a nutshell, this new program will focus on community connection and peer support by offering:

  • Resources for the early days, weeks and months -- from planning a funeral service or creating a memorial fund to thoughtfully removing your loved one from social media or explaining type 1 to others.
  • Sharing stories from those who've experienced loss -- some after living with type 1, others due to a missed diagnosis and DKA.
  • Peer Support Connections: Whether it be fellow parents, siblings, spouses or loved ones: This will be set up in private groups in a specific Jesse Was Here app. "This will be a safe, closed community for those people to grieve privately together," Michelle says. There will also be administrator-style "mentors" in each role of parent/sibling/spouse/best friend who's been through the experience personally, enabling them to truly empathize and guide the discussion as needed.

Essentially, it's about embracing the idea that "Your Person Was Here," both Michelle and Sarah say.

The mobile app will be created pro bono and powered by Mighty Networks, and Beyond Type 1 is working to fund this via donations on the Jesse Was Here site. People can even become "Founding Friends" by committing to multi-year financial support.

Michelle says that peer support is huge, especially in those early days when people are grieving. Speaking from personal experience, she says that many just want to do something in the name of their loved one, but often don't know where to turn or how to channel their grief and emotional energy.

"We're offering people tools to do that... and help them in ways I was helped," Michelle says. Her Facebook group has hundreds of parents and family members who've been connecting for several years, and she expects once Jesse Was Here officially launches that they'll (unfortunately) reach over 1,000 people very quickly.

 

A Lasting Legacy, and Relieving Medical Debt

Another big goal for Jesse Was Here is to offer opportunities for families to celebrate their loved ones through legacy projects, while also raising T1D awareness or supporting others who are navigating loss.

That may very well include giving people a way to setup their own pages and "walls," to write messages on and establish their own individualized legacy projects.

"When your child dies, you don’t think about these costs," Michelle says. "Most people don’t have an extra $15,000 in a bank account to pay for funeral costs for their child. Or the headstone, or ongoing medical costs that arose from a hospital visit or ambulance use. Everyone at Beyond Type 1 agreed that there’s a service here to be done."

That may also at some point involve helping families pay for headstones or paying off outstanding medical debt, which can carry on long past a loved ones' death.

Sarah says the idea of paying off lingering medical costs comes, in part, from the work Beyond Type 1 did recently in its multimedia Previously Healthy storytelling project detailing the missed-diagnosis, DKA-caused death of 16-month-old Reegan Oxendine in North Carolina. They learned the family was still paying off numerous costs even after their little girl had died in 2013, they were still on the hook for a monthly bill relating to expenses in the days leading up to Reegan's death. As part of Previously Healthy and for the first time ever, Beyond Type 1 decided to use its own donations to pay off the family's outstanding medical debt.

Now with the Jesse Was Here program, the org hopes to make that a longer-term part of what they can do for grieving families in the D-Community. Sarah Lucas penned this letter online when launching the program Aug. 30.

 

Writing on the Wall

Where did the program name come from? Simple: It came from a moment where Jesse wrote his name in gold marker on a wall at camp.

In the Summer of 2009, Michelle took her family camping locally in Wisconsin and the resort allowed people to write on the walls. Her kids happily did so, and Jesse straight up wrote the classic: “Jesse Was Here.”

Six months later, he was gone.

Michelle says she couldn’t stop thinking the resort would paint over her son’s words. Her family tried contacting the resort about cutting out the wall panel as a keepsake, but the business was in foreclosure so no one could negotiate that. It devastated her, Michelle recalls.

But soon after, by what she can only describe as “magic,” the wall with “Jesse Was Here” phrase appeared at her home. She kept it in her living room for years without hanging it up, but eventually a friend made a custom frame for it, and she packed it away to bring out each year on his birthday and the anniversary of his death. Finally in 2017 after moving into a new house, she found the perfect spot to hang it. 

“I truly believe the universe put me on the path of these words for what lies ahead at Beyond Type 1, to help other families in their grief,” Michelle says. “Because all we want as parents is for our child to be remembered, that they have a place in our hearts even though they are gone from this world.”

Clearly, Jesse's legacy lives on and will grow to touch numerous lives. 

Just as Jesse did so many years ago on that camp wall, his name is now etched into a new virtual wall online for all the world to see. And the image used for this program is fitting -- a white dandelion blowing in the wind, with the seeds being carried far and away.

Now, that's the fate of Jesse's story: to seed the world with inspiration, just as he did in life for all who knew him.