Five years since diagnosis, a moment in time replete with dark, challenging, stressful feelings but a time to see first hand just how much stronger kids can be. Me? I was a hot mess, mixed in with much needed healthy doses of stoic practicality. We needed to do the insulin injections as she cried with fear and pain. We needed to wake up, several times during the night, to confirm her blood sugar readings, and to take action if too low or too high. We needed to help our daughter all the while my wife and I learning how to be a pancreas. Because that’s the thing that stops working when you get Type 1 Diabetes (T1D)! The pancreas, that is.

I still cried. A ton. And I admit that the trauma is almost ever present, just beneath the surface, easily called up.

Five years into our journey and still waiting for a cure; just five years more! That’s an inside jokes for all of the T1D folks out there. But in those five years we have been able to adopt the rapid advancements in supporting technology: better continuous glucose monitors (CGMs), do-it-yourself (DIY) looping and now, a true life saver, the Omnipod 5. Five years have been spent learning, struggling, succeeding and failing. Multiple times in and out of therapy for my wife and I. Lots of moments of utter confusion, angst, frustration and shrugs of surprise. Through these moments, though, we – my wife, son, daughter and I – have grown, and grown closer together.

Five years of lessons, given to us by T1D (and Celiac as well; much more challenging, by the way). My daughter has absorbed all of this much more effectively than I. My progress has been much slower. My resilience and strength often absent as we face an unexpected failure of technology, when the high blood sugars seemingly want to stay quite high and when the loud beeps of the alarms signal action required to treat a low.

Five years and yes, we are smarter about the disease. But f*ck. It throws a curve ball almost each and every day. We just get better at accepting that often we’re simply not going to hit that pitch.

To continue the baseball metaphor, we continue to get the at-bats. We get to take those pitches and get the hits, strikes, walks and plenty of hit by pitches. Some folks out there aren’t able to do that anymore.

As I write this, roughly five years post our diagnosis and those painful early days helping manage the disease for our daughter, I think about someone who isn’t around to get up for another at-bat at the plate. I didn’t know Katie DiSimone (https://www.gofundme.com/f/support-katie-disimone-and-her-family and https://www.tidepool.org/katie-disimone). She recently passed away from stage 4 glioblastoma. Katie, along with many others, was a living force beyond one of the most important Type 1 Diabetes efforts out there: Loop. We’re not using this system any longer but without a doubt, Loop – created by everyday folks outside of the industry! and a system that automated insulin delivery based on blood sugar numbers from a CGM – was a critical step forward in our lives: it enabled us to get better control over my daughter’s diabetes and, while not perfect – far from it – Loop gave us some incredible results (I write about some of this here and here).

When I did the first install and build of Loop, and got it up and running for my daughter, I posted a picture of my daughter in the Facebook group for the community.

Katie was kind enough to comment on this post.

Facebook itself didn’t do justice to the emotions coursing through me as I posted that back in 2019. And these words today don’t do justice to the gratitude that I have for the community of people that is the Type 1 Diabetes family.

I didn’t know Katie DiSimone but I am grateful to her. I wish that she had another 525,600 five minute cycles of waiting for blood sugar numbers to pop up from her own daughter’s CGM.

I hope the same for myself.

Leave a Reply

Your email address will not be published. Required fields are marked *