Sixteen years ago it was probably there, right in front of my face. My daughter was getting ready to start kindergarten (what would be her first school experience. I was a “Home school pre-school mom” as I learned to say instead of “no, we cut and paste at home” which all kinds of people freaked out about).
She’s started to show some odd behavior – and my friends convinced me it was because she was nervous about starting school (since I’d so selfishly kept her home those pre-school years).
Now I know it was diabetes. Now I know she was very sick. Now I know she was fading.
So a few weeks later, almost 16 years ago, I sat on the edge of her hospital bed and made a promise:
I promised to go to the ends of the earth, if I had to, to make her life comfortable in the present despite diabetes, and to work toward a better future for her – some day hopefully without diabetes.
Now, 16 years is a long time. It’s easy to have hope in the beginning. It’s easy to rally your friends behind your cause at the start. It’s a snap to get attention and support and compassion when your child is a cute little thing that knows how to work a glucose monitor, does her own cannula insertion for her insulin pump and frolics and plays despite diabetes.
But time marches on. Friends get tired of your story. Your cute little kid becomes a young adult. Your hard work at making life excellent, awesome, perfection, rock-star amazing for your child despite diabetes fools the world into thinking it’s no big deal; that it’s all settled in and you’ve moved on. That its – gosh I hate this word – regulated or something.
But it’s not.
But here’s the thing: in my case, none of that sad stuff has happened. Because here I sit, 16 years after diabetes started to poke into our lives – and this is where I am:
I am surrounded by caring and compassionate friends who are still willing to help me with my promise to Lauren.
And to that I’ve got to say: Pinch me. Next week I head to LaCrosse, Wisconsin where I’ll take on my second JDRF Ride to Cure Diabetes. Last year I faced the scary 105-mile on day ride in Death Valley, California. My friends – even some new friends and some strangers – fueled my ride with incredible donations. I was the #3 rider in the country, and Lauren told me afterward she was profoundly moved at my hard work and all the donations people made.
This year, I felt a little guilty about doing it again. I mean …. Eventually I have to just give up and go away, right?
Nope. Not if you have friends like I have. Right now I am the #3 fundraiser in the ride, and the TOP one in all of New England for all rides.
And that’s not because of me. That’s because of the friends I have in this world. So to each of you, I say thank you. You are the reason we are thriving despite diabetes. You are the reason Lauren has more choices for treatment. You are the reason the bionic pancreas is in real human clinical trials. You are the reason the concept of encapsulating islet cells to help cure diabetes is getting closer to real.
You are the reason our hope, instead of dying, is thriving. And I hope you know that an embrace it. Next time you have a rough day or are in a bad mood or feel like you’ve accomplished nothing: hear my voice and hear it loud:
You have changed our lives for the better. You have helped my daughter thrive. You are flipping incredible.
My ride starts at sunrise on Aug. 17 in LaCrosse. It will probably take most of the day. Every mile, every moment, I’ll be thinking of all of you who have helped me with my dream, and I’ll be singing loud.
I might be out of tune but I’ll be right on message.
(click it and listen. It’s truly how I feel about you and what you’ve done for my child and for me – -and for the world)
Filed in: Advocacy • bionic pancreas • bionic pancreas study • cool new diabetes tools • cure • diabetes diagnosis • diagnosis • featured • Fundraising • Inspiration • JDRF • JDRF RIde to Cure • Kids Can