WRITTEN BY: Michelle Bauer (Alswager)
“I’d Give Up Forever To Touch You” – (said the GooGoo Dolls)
A reminder from a friend who saw my LinkedIn anniversary came up today as I was thinking of so many good – and bad – things in the d-world. Four years. Four since I started writing about points I want to make in the world of diabetes especially after losing my son to the disease. It was surreal to read that from him and it caused me to reflect and ironically a reflection only this past week in the d-world.
Tonight as I type this, my thoughts are with d-world friends who lost their daughter at the age of 17 this week, literally days after completing the JDRF Ride to Cure Diabetes in honor of their other child, you know… the “d-child.” My point is not to call them out but to rather talk about life and how we think of it.
You see this family had found me when their son was first diagnosed with Type 1 diabetes and how they feared the worst for their T1D son. And I could tell you our story of finding each other but really, our messages back and forth tells it as it happened so I’d like to share it as it happened if you would oblige me.
It began on January 27, 2013, three years after I lost my son to the disease. Her (mom) messaged me:
Hi Michelle, I know we’ve never really talked, but you should know that you’ve been part of my T1 journey since the first week of my son’s diagnosis in 2011. To be honest, initially I wasn’t too thrilled that you entered my life. My son was diagnosed at 11 on June 11, 2011 on his last day of 5th grade. When he was diagnosed, that first week I kicked into the “suck it up and manage” mode. I focused on what needed to be done.
Learn from the medical staff, read books, stock up on supplies, educate him, etc. I thought if we did all of that, things would be just fine. Sure the books spoke of risks and potential long-term damage, but with the significant advances in diabetes management and how well we planned to stay on top of things, I wasn’t really worried.
After I had cleared out a space in our cabinet and neatly arranged the diabetes supplies, I thought, “Okay, now we’re ready for the rest of our lives.” Then I turned to getting involved with JDRF. We had received a “bag of hope” at the hospital and I wanted to find out how to get him connected with other kids with T1 and how we could get involved to help find a cure. I went to their website and clicked on the events tab.
I saw a link for Jessepalooza. You know how some things trigger contextual memories? This is one of those things for me. It was already way past my bedtime and I hadn’t gotten enough sleep for well over a week. I was propped up in bed with my laptop and was really quite cozy. Perhaps I was still in shock, I don’t know.
I clicked the link and saw an image of a moppy-topped DC hat-wearing pre-teen that eerily resembled my son. Not that I could see his face well (just as I could rarely see my son’s). It had been a long time since anyone had seen our son without a hat, and even longer since anyone had seen his eyes through his hair. The image also had the boy with a guitar and huge amps. This moppy-headed boy likes music. He is always listening to music. Had I just found a boy with T1 that he would have something in common with?
So who was this Jesse and why the palooza? Of course you know what I found when I looked into it further. Jesse had Type 1 and died.
At first I was delusional and thought, sure he had Type 1, but maybe that’s not what he died from. Maybe it was a freak bungee jumping accident that caused his death. Maybe he was walking home from school during a storm and a tree fell on him. Any of those preposterous scenarios would allow me to hold on to the belief that we could protect my son from the worst of this disease and it could never threaten to take my child from me.
Of course the readings I had done had mentioned that death was a risk, but hey, doesn’t everything from a bottle of aspirin to drapery come with some sort of caution that it may cause death? I read how Jesse’s school held a “hat day” in his honor. My son would’ve enjoyed participating in that. I read of all of the work Jesse had been involved in with JDRF and the childrens’ senate.
He’d worked to educate and raise awareness of T1, both locally and nationally. He had apparently been, literally, the poster boy for JDRF and T1 had the balls to take him just the same. Okay, so his death was due to “complications from diabetes” – so what the hell does that mean?
I googled deeper. That’s when I met you. I went looking for the details of what happened to Jesse so that I could be sure not to let that happen to my son. But you saw me coming, or rather, other parents had beat me there. How horrible that must have been for you. You must have felt under incredible scrutiny from panicked insensitive parents cross-examining you about something that was none of their business.
While I wasn’t one of the parents that contacted you, I know I could have been, so on behalf of the panicked insensitive parents, I’m truly sorry. I understand now that sometimes there just aren’t answers. I cried so hard for so long that night. Started as a single tear rolling down my cheek and quickly evolved into gasping-for-air sobs.
I couldn’t separate when I was crying for Jesse, when I was crying for my son, when I was crying for you and when I was crying from my fear of one day being you. When I looked at pictures of Jesse I saw my son. So the first gift you gave me was a virtual slap to the face that said “Wake up Polyanna, this #%*<^#%# disease can steal your baby.”
I read everything I could find about you and Jesse that night. I read about your work with Triabetes, the Ironman, the Ride and on and on. Everything I read was truly inspirational – and not in prim, perfect-picture kind of way. That was the first time I met you and Jesse. I wasn’t planning on going to Jessepalooza. As inspired as I was, I just didn’t think I was ready for it and didn’t want my son to be confronted with the fact that he could die from this. Not yet.
But as the day came closer, I started to reconsider. I considered that there would probably be other T1 kids there and it could be good for my son to be surrounded by folks rallying to cure diabetes. And after reading so much about you and Jesse, I kinda really wanted to be there, even just for a little bit.
We went and it was a great experience. And then of course there was the ride. The ride experience was another gift that you contributed to. I remember being a bit star-struck the first time I saw you at a training ride. I had to stop myself from staring. It was very odd feeling this connection to you that you were oblivious of (of course). I felt that I knew way more about you than I had a right to, having just met you. Frankly, it was creepy. I was a little embarrassed. I felt a bit like a stalker.
With a disease that often make me feel helpless, doing the ride was a way for me to feel like I was doing something to take control. The team experience was a bonus and you were a huge part of that. I doubt I showed it much, but I can’t tell you how much each and every smile, greeting and word of encouragement from team members meant to me. Being new to the ride, it was clear to me that long-term friendships existed among team members, and at times I felt a bit like an outsider, but I understood, because I was an outsider. That did not surprise me.
What did surprise and delight me was how certain people, you among them, seemed to make a point of learning new folks names and trying to make them feel welcome and included. Bless you for that. I could also go on and on about Mr. Joe Brady (who I adore), but this letter is about you. The week before the race, when the farthest I had biked was 45 miles (always with a sweeper) and Joe had essentially given me the “remember it’s about the experience, not about finishing” talk, it’s pretty safe to say I was feeling a little dispirited. Mind you, I had no intention of not finishing, but it was looking like I had to face the fact that that was one possible outcome.
I ventured back into your blogs. I raptly re-read about your grueling return to Death Valley after Jesse died. Now, keep in mind that I had just watched you kick a** training all summer in the heat and knew you were a really strong athlete. This may sound incredibly selfish, but when I got to the part where you sagged up Jubilee, I was tickled pink. Another gift. Hey – the whole thing about organizing a celebration committee at the finish line – how fabulous is that? This past year I was too busy trying to keep myself together that I’m sure I didn’t communicate how touched I was by everyone’s support at the finish line. I’m so going to be a better cheerleader for others next year. I have more I want to share, specifically about Riding on Insulin and your work with the newly bereft, but if I don’t wrap this up soon, it’ll be at least another week before I get it off to you, so I’ll save the rest for later. I just thought it was time for me to come out of the shadows. Shadows sounds creepy and nefarious, it’s more like I’ve been in the shade of a tree, watching you, trying to catch my breath and keep up with you. There. I’ve finally come out as a card-carrying member of the Michelle Bauer (Alswager) fan club.
And now my time is spent creepily looking into her world, her pain, her life. The world she was so afraid of is now hers and her husband’s. And her son’s. So unfair, isn’t it? But I share their story not to scare, not to intimidate but to share a simple universal message that life is short, we don’t know what tomorrow brings and we can worry so much about our T1D, but things are just out of our control. The universe unfortunately plays the card, shuffles the deck. Such a complex thing life and death. But on this journey I am grateful to have received this note from this mom because we will get through this together. We are given what we are given and we trudge. You do too. Let’s do it together. It’s the best way to face it. Solid d-world families proud to be part of “you.'”
