@jeremypollock

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.

For most, the number, twenty-nine, represents a count of something: years, dollars, tweet views, whatever. I too attach a meaning to this number but it is one that I assume is rather unique in this world. Twenty-nine represents the time I almost killed my daughter.

Only a couple of months removed from her diagnosis with Type 1 Diabetes (T1D), at a young age of three years old, my wife and I were still learning how to manage our daughter’s disease. There were lots of mistakes but nothing seemingly disastrous. That changed one night when I decided to be aggressive in treating a stubbornly increasing high blood sugar level. And I did so at the time when we were flying blind: our daughter’s continuous glucose monitor (CGM) had entered into an error mode and had stopped reporting back her blood sugar levels every five minutes, per normal function. But she was so high though that I believed that all would be OK. And I was so tired that I could not withstand a night of constant alarms about dangerously high blood sugar levels.

Like most nights, having helped run the day with my wife, getting kids ready for school, meals prepared, showers executed and all of the other things parents do to make it through the day, I was exhausted. Dozing in and out, but with the knowledge that I was without the precious blood sugar data necessary to know what was happening with my daughter, I fought sleep for some time. I lost the battle. Several hours later, I thankfully woke. I checked the phone that would report the blood sugar numbers streaming off the CGM attached to my daughter’s belly. Still no readings. Still the error condition. For some reason, I had the thought to do a manual check. To prick my sleeping daughter’s tiny finger in order to grab a drop of blood to be read by the glucometer. I still remember the hesitation of not proceeding with a finger prick. My bed was too inviting. Sleep still seemed like it could be visited again.

Doing a finger prick in the darkness of the night, with aging eyes and lights kept off so others can continue sleeping, is indeed a skill. One that I wish I did not have to have. But one that I have perfected nevertheless. That night was not much different: find the glucometer, prepare a test strip, swab a finger with an alcohol pad, and then use the lancing device to prick a small hole in the finger, through which blood could flow on to the test strip. The numbers come back quick enough and that night, much like many others, I waited the five seconds to see what the glucometer had determined was her current blood sugar levels.

29. 29. 29. The number flashed on to the small screen of the glucometer, the dim light the only illumination in the dark room. It was – and still is – a number worthy of panic. I shouted to my wife, ran downstairs, returning quickly with a box juice, hoping beyond hope that she was still able to take the juice in, that she had not become unconscious and unable to draw the sugar-laden liquid up through the straw and into her mouth and ultimately down the throat and into the stomach. She was able to. And we let the sugar works its magic. We did more finger sticks and her numbers began rising. Disaster averted.

As I climbed back into bed, enveloped in the blackness of the night, I lay next to my wife. We were both silent. But I was not silent for long.

Thunderous waves of emotion rolled through me. The crying was as deep and profound as when I was in a similarly darkened room during our first night in the hospital, post diagnosis. Fundamental, relentless emotions took control and I could not stop the convulsions, the sobs and the tears. I tried to speak, to let my wife know that I had checked my daughter’s blood sugar levels mostly on a whim. I tried to tell her that it was luck. But no words could be formed and she held me tight.

Twenty-nine is just a number. For me though, it is a reminder that, while managing T1D is indeed much easier than ever before, thanks to so many incredible technological innovations, mistakes can happen and those mistakes have life and death consequences.