(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.
