On February 3rd, 2010, at age 13, my son Jesse Alswager passed away due to complications with type 1 diabetes. He was a light in our eyes as being strong in the face of a chronic illness. Known as "everyone's little brother" he loved guitar, drums and snowboarding. Diabetes is a horrible disease that attacks under the best of care--I've spent the past 10 years fighting for Jesse and a cure, and rest assured his passing is just the beginning. Click here to donate to the Jesse Alswager Memorial Fund.
Jesse and family did the first Team Alswager Walk to Cure Diabetes for JDRF on his 4th birthday. The family and friends team raised $22K the first year and continued with the Walk to Cure for years to come.
Jesse and Michelle joined the JDRF Children Congress in Washington DC alongside 200 children from throughout the world with type 1 diabetes to raise more government funding for diabetes research. Jesse participated in a senate hearing with the children and Mary Tyler Moore, the International Chairperson of JDRF.
Through the years Jesse has gone to DC and local offices to meet with Senators Feingold and Kohl to keep diabetes research and stem cell research at the forefront. He has visited with Rep. Tammy Baldwin on dozens of occasions and participated in several of Governor Doyle’s press conferences on the Discovery Institute.
January 17, 2006
Jesse was the subject of Governor Doyle’s State of the State Address for his advocacy for stem cell research advocating for his own cure.
Jesse and his close friend, Aaron Liebe (also diagnosed age 3) have been the junior Ambassadors for Thunder Run – a benefit by the Capitol City Harley Davidson each year – for the last 5 years to raise money for diabetes. He was to ride with his dad on 7/10/10.
In 2008 the documentary Triabetes was created – a team of 12 type 1 athletes who embarked on Ironman 2008 – by his mother in his honor – to prove to the world that people with diabetes can do anything they aspire to do.
In addition to his inspiration in the diabetes world at the age of 13 he was called “everyone’s little brother” by his friends and siblings friends. Jesse was a light in all of our eyes as being strong in the face of a chronic illness. He loved playing guitar and drums – and of course snowboarding with his best buddie, Sean Busby – professional snowboard with type 1 diabetes.
I would want people to know that diabetes is a horrible disease that sneaks up and attacks under the best of care.
The Jesse Alswager Memorial Fund has been set up at UW Credit Union. In lieu of any flowers or gifts, we'd appreciate any donation to Jesse's fund. Any UW Credit Union branch will be able to accept donations. Or, please mail donations to:
Jesse Alswager Memorial Fund
c/o UW Credit Union
PO Box 44963
Madison, WI 53744-4963
Year 4 - 2/3/14
Feb 1, 2014 9:49pmYou may be wondering what a mom does 48 hours before the anniversary of losing their child. Well, they do what they always do. They get up, make coffee, do a little work on their laptop, check their facebook, shovel the relentless snow. But they also find themselves uncomfortably and uncontrollably looking at old photos, letting their mind wander back to normal....and they find their way back to a caringbridge site that they have not opened or journaled in since 7/4/2011.
You may also be wondering why I would want to torture myself by reading all of your well wishes and thoughts. I thought about that as well. But the realization is that I couldn't really appreciate those messages for what they were at the time and can now read them and understand them.
As I read through them I couldn't help but notice many things. The quantity of condolences that came from complete strangers that are now my friends. How I've lost touch with many familiar faces.
And it occurred to me as we come to the 4th anniversary of his death some of you deserve to hear from me and hear how our family is doing.
In the years since Jesse's death there have been many changes in my life. I continued on at Brava Magazine (loved it) for a long time and was lucky to have great support in my coworkers. But in April of 2013 I cashed that all in to start working full time at Riding on Insulin. If you do not know the history of the ski/snowboard camps and how I landed there I encourage you to read this article:
There is no greater joy than going to work every day to a place Jesse loved with all of his heart and with people he loved as well. To think that the person who cared enough about me to create this very Caring Bridge page (Mollie Shambeau Busby) is the very person I work with day in and day out after she married my friend Sean (whom she met at Jesse's funeral and married him on what would have been Jesse's 15th birthday). I spend my days traveling all over the country to hang out with d-world families and meet d-world kids. Not a bad gig.
Jesse has been remembered in many ways - one big way is the #23 - 2/3 being the date of his death has also now become a mile of silence through the JDRF Ride to Cure Diabetes.
I moved about 3 years ago into a house about 2 blocks from Jesse's dad (Tom). Tom and I have remained good friends and I am very proud of that. Samantha is now 20 and the only plan I've heard her solidly talk about is wanting to spend her 21st birthday in Vegas with us (ha!).
Joey is now 13 - a tough deal when you lost your brother at that very age. But he's a solid kid who walks the halls his brother once did at Toki Middle School and seems to have found his own crazy stride. Just tonight I said to him that it was nice to see he was actually eating what I made for dinner. His reply? "Really mom, this man is not that hard to please..." Um.... ok? :)
I am the most fortunate for the fortress I have built around me. The friends in my life are amazingly supportive. And while people come and go from our lives I am happy to say the new friends I have who never met Jesse are just as supportive. I'm also very fortunate that I bothered to go to my 25th class reunion since that is where I (re)met Matt almost 2 years ago and been together ever since. As I write this he is creating a display case for the "Jesse was here" plaque. Fortunate is the right word.
In these years I have also found myself helping other families who have lost children to type 1 diabetes. Since Jesse's death there are about 80 families that have reached out in their losses - one just this past week. I help them connect with others so they know they are not alone in this horrible pain. I want them to know that 4 years later they can smile and find joy.
When I went through and read all your kind words I just wanted to say thank you. And sorry if I never reached out to you directly after your comments. Your words mattered then, and they matter now.
Many of you vowed to be more involved in helping kids live better lives with this disease. So I encourage all of you to take a look at what I do every day in Jesse's honor at Riding on Insulin (www.ridingoninsulin.org) and watch the video on the home page. I'm very proud to do it and I hope you find it worthy too.
I hope this letter finds all of you well. Thank you for all you did to get my family through the worst of days. My new email is email@example.com.
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Jesse's CaringBridge site is made possible through donations. You can make a donation to CaringBridge.