Jesse Was Here: What If Type 1 Diabetes Hadn’t Taken His Life?

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Here we are in the future, according to the old movie Back to the Future 2. Marty McFly has made it to 2015 in real time. And while many had a good chuckle on what has really come to fruition and what has not since that movie was made, I realized that for me time stopped on February 3, 2010 when my 13 year old son, Jesse, suddenly passed away due to type 1 diabetes. So instead of being a 19 year old young man today, he is still 13, alive only in our minds and our hearts. I wonder frequently who my son would be today – who I would be today – if he were still here.

So today I’m thinking about Jesse and what he would think of this “now,” the futuristic type 1 diabetes landscape, and where he fits in. And since I get to dream, I plan to dream big for him because that’s what moms do. He’s at a small out-of-state college with a huge music scene. I spend time skyping with him, asking him when he is coming home to visit, and telling him he violated the contract he signed at the age of five, promising that he would never move more than five miles away from me. He rolls his eyes. He tells me I post way too much on Facebook and asks why can’t I get a handle on Instagram and as long as we are on the social media topic, he tells me I am WAY too old to be snapchatting. I remind him that I am the coolest mom EVER, and I like to pretend to vomit rainbows and draw beards on pictures of myself and send them to him. (If you do not know what this is, ask a teenager.)

Jesse was Here - What If Type 1 Diabetes Hadn’t Taken My Son’s Life?

Jesse and I talk about the band that he formed – Enchilada Snowmen – and he tells me they lost their drummer so he is switching from playing guitar to drummer for a while (because he is just THAT awesome and musically versatile.) Since we are chatting music I tell him about meeting Nick Jonas at the Beyond Type 1 launch party in San Francisco. Of course, he doesn’t care nor is he impressed because he already knows Nick since Nick snowboards and so does Jesse. They’ve already done a few snowboarding Riding On Insulin camps together. And (obviously) Jesse is an elite coach for Riding On Insulin since he is now an adult and he just got back from Mt. Hood coaches’ camp with his best friend and mentor, Sean Busby. Jesse tells me Sean and he had a heated conversation as they were racing down the mountain because Sean refuses to let him become a “park rat” and tries to convince him to go on another backcountry expedition with him. As he tells me this, he swipes his long brown hair away from his brown eyes and says, “pfssssshhhhh, whatever.” He is totally crushing on Cassie Davis, a co-coach snowboarding super babe with type 1. (Again, this is my fantasy future, and I’m giving him a good one!)

Jesse asks me how my job is going at BRAVA magazine because I don’t work at Riding On Insulin in this future. Instead I have continued on as marketing director at the magazine. He is still super excited about my Ironman finish this year because somehow I have to believe that the universe was still going to make me do that! I reflect back in this future on how exciting it was to have all three of my kids at my swim start, hugging me, telling me I could do it, telling me they love me and are proud of me. And I get to envision Jesse, just this once, at the finish line telling me he knew I could do it.

Would he be wearing an Omnipod? A T-Slim? Would he have finally given in to wearing a CGM even though he considered it just another tool that makes him look like the control panel of an airliner? I’m very happy to have the Share app on my phone, monitoring Jesse’s blood sugar trends while he is off at college. He would fight it, but he would finally giggle, relent, and put on that Dexcom CGM. But, no diabetes alert dog for this kid, no way. Diabetes for him could not be so noticeable, as it would interfere with the babes.

Jesse was here

And when I read my own story – his story – it comes down to this: Jesse’s life, like these small paragraphs about who I believe he would be as a man today – is that diabetes, in his mind, is just a small part of him. And I am so proud of that.

Now as I turn back to reality, I feel happy to have seen Jesse, if only as a vision, as future Jesse. And if I know anything for certain about Jesse, I know he would end this fantasy with, “Mom…, stop talking about diabetes.”

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Maureen Berghoefer - Brian's momChris WilsonJan SnedegarRachel Zinman- JeanesAgnes Rayome Recent comment authors
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Maureen Berghoefer - Brian\'s mom
Maureen Berghoefer - Brian\'s mom

Beautifully written and dreamed Michelle. Your words are even more powerful this year. My fantasy – What if there was no Type 1 Diabetes or the cure was not something we continue to fight for, but something already attained. What if it hadn’t taken both our sons. 23, 23. Hugs

Chris Wilson
Chris Wilson

We lost our daughter Nicole to Type 1 diabetes 3 years ago this may. On march 2nd she would have been 18. I have similar dreams and visions of the woman she would have been. Your story is beautiful and moving.

Nicole’s Father.

Jan Snedegar
Jan Snedegar

This is such a moving, imaginative tribute. God bless you Michelle, I feel like I know Jesse through this very poignant futuristic vision of him.

Rachel Zinman- Jeanes

I absolutely love this beautiful moving vision of the man your beautiful boy became. I am so so sorry for your loss and can’t imagine bow hard your journey has been, but obviously through your story and vision you have found deep meaning in your life. Thank you so much for sharing your story….

Agnes Rayome
Agnes Rayome

My 17yo T1D daughter frequently daydreams an alternate reality where she is free of diabetes. It helps her cope with the day to day stress and frustration of managing T1D. Lets do all we can to find a cure, of any type, so we don’t have to daydream. So sorry for your loss, Michelle, it breaks my heart. I’m sure he’s looking down on you and is very proud.

Alysha Heise
Alysha Heise

So sorry for your loss :(

Zach Stigler
Zach Stigler

Good to meet Jesse through your beautiful words, Michelle. I know he and Graham would be fast friends on the snow and dirt. And thanks for all you do for the T1 community. We truly appreciate it.

Zach Stigler
Zach Stigler

So good to meet him through your words Michelle. I know Graham and he would be great friends for sure. Thank you for this and all you do for the T1 community.

Michele Johnson
Michele Johnson

I’m so sorry for your loss. I loved reading about Jesse and your vision of who he would be today. You do seem like the coolest mom ever. Your vision of Jesse reminds me so much of my son Tyler, who is 19 and was diagnosed with T1D at 18, the summer before he was heading off to college, and exactly one year after I was diagnosed T1D at the age of 50. Tyler is an avid snowboarder, loves music and the babes. He would have probably really liked your Jesse too! Although he is away at school, frequent phone… Read more »

hmbalison
hmbalison

I’m so sorry for your loss of your son, but I thank you for your beautiful tribute.

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