Wednesday, September 28, 2016


(In my best impersonation of The Donald)
My son is very, very, very good – let’s just say – he does a tremendous job at managing his diabetes. Everyone says that he is doing a really, really great job. All the doctors are amazed at how good his A1C is. He does tremendously. His A1C – really, really good. Believe me! You’d be impressed.

Unlike many of Donald’s statements, this one is true. William really does do a tremendous job. He really does rock his A1C. He does surprise doctors that marvel that testosterone and puberty haven’t gotten the best of us. They ask how we do it. We fight from becoming smug and thinking “we’ve got this”.

This boast to you has a purpose. We manage very well. We work hard. We put in place routines and double checks. We remind each other. I nag. And nag. We get the best technology. We are planning for a diabetic alert dog for another layer of alerts. I study. I go over reports. I try new recipes, encourage exercise. And yet, last night could have ended very badly.

It is important to understand, (and yet I know you won’t really unless you live it) that even with the greatest effort, T1Ds and parents of T1Ds live with the knowledge that the slightest mistake could be serious, even deadly. I want you to understand because there are T1Ds and parents out there struggling, working hard to achieve just normal health.  

Last night, William’s pod ran out of insulin. It gives a very high pitched alarm which neither of us heard. It’s Jeffie’s, my cat’s fault. He usually wakes me multiple times a night and I instinctively glance at my Pebble watch for William’s BG. Perhaps I was just too tired, but I didn’t wake until 5 a.m.  William, surprisingly, was already awake. (He normally will not wake to alarms.) His pump had been out of insulin for four hours! The longest one should go without insulin is two. His blood glucose was close to 300 mg/dL and he had small ketones.

You might ask where was the Dexcom (continuous glucose monitor) alarm? My high alert was off – I’d sometime turned it off because I knew he was high and the constant alarming was disturbing something or someone. I’d forgotten to turn it back on.  William’s phone was silenced. Both of these things should not happen – but it did. We screwed up. William didn’t want to wake me – he knew I must be tired if I didn’t answer the alarm.

How many times have you accidently left the house without your mobile phone? Or lost your keys or work ID? Forgot to get gas the day before and you’re running late, and now need to fill up? Forgot to bring the checkbook or cancel that appointment? Imagine that forgetting or making one mistake would make you deathly ill. I can't fault him for forgetting to change the pump. It is so easy to do.

In debriefing, we think that his intense workout before bed kept him from going really high. We put in place a better before-bed check list. We learn often, with this disease, to forgive ourselves, improve our routines, and move on. There are nights when I’m outside and I look up at the stars and wonder – how did this happen?  Why did this happen to my precious boy? He is so strong and so good. Believe me.

Note: We will be volunteering this year at the JDRF Walk this year at Churchill Downs on October 15th welcoming new families. Because we'd already asked your support during fundraising for a JDRF bike ride, we are not forming a walk team or fundraising. William and Kurt are joining a JDRF bike team in training and plan to use this way to participate next year. If you'd like to ride with us or find a JDRF bike team in your area, drop me a line.

Friday, September 09, 2016

Timing is Everything

Mass was about to start, so I turned down the volume on my iPhone and silenced it. I slid it into the handy pocket on my thigh of my new capris. Every once in awhile, I slid the phone out and checked William's blood glucose. It was still good. William was home sick with a mild stomach ache and no other symptoms. Something he ate? Appendix problems developing? A virus?  A chance to sleep in? (Turns out it was a virus.) There was no way to know and only time would tell. With BG monitoring technology and only 2 miles away, I deemed it safe enough to leave him at home alone while we went to Church.

Yet, I was concerned, as any MOD (Mother of Diabetic) would be. If he were to throw up, a crisis could develop rather quickly. My Pebble watch which normally displays his BG at a glance and notifies me if he texts, was not working. And so, I pulled out my phone periodically to check the "Follow" app displaying his BG.

Midway through, the deacon stood at the ambo, trying to make sense of the readings exhorting us to leave our families to become a true disciple (Luke 14:25-33). "Did God truly want us to hate our fathers and mothers, our wife and children, ourselves?" I'm not quite sure what he concluded. As the homily came to a close, he turned to go back to his seat, and it was deadly silent in our large, cavernous Church. I - unwisely - felt for my phone to check on William.

"SORRY, I'M NOT SURE WHAT YOU SAID" echoed around the walls of the Church. Somehow, without meaning to, I had wakened Siri. Why was she not silent?? My phone sounds were off!!?!! Mortified, I tried to silence her, but too late. I heard simultaneously a collective gasp and laughter from the congregation.

Oh, but, maybe no one would know it was you, you might say. No, see, we sit off in a section nearly by ourselves. During flu and virus season, there are less chances of having a really sick person sit behind us, having to exchange a handshake with someone that just sneezed into that hand. Getting the flu or a virus, can be serious now. So there we were, on display, so to speak. The timing could not have been worse.

We could have maybe pretended we didn't know who just did that, except my husband turned the purple color of his shirt and put his face in his hands. He could not fit under the pew, so that was the closest he could come to hiding.

This is one of those stories that will be passed down to my grandchildren, I have no doubt. I hope I lightened the day for those that laughed. I hope those that gasped can forgive me. I walked out with my head high though. I will protect my T1D warrior at all costs. And Siri, you bitch, I'm turning you off.


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