The Tired T1D Parent — A Unique Perspective
Editor’s Note: Jesse Was Here—A program of Beyond Type 1 was inspired by Michelle (Alswager) Bauer’s experience after her son Jesse’s death. Michelle’s unwavering commitment to the type 1 diabetes community + her support for others is the basis for this program supporting + building community for those who have lost someone to type 1.
When my 13-year-old son, Jesse, died unexpectedly six years ago it goes without saying that the grief was—is—immense. Not only was I grieving the loss of my son, but there was this strange grief surrounding the loss of diabetes in my life as well. It was my “normal” for 10 years and suddenly it was gone. No more waking up in the middle of the night and trying to shove teddy grahams and juice boxes in the mouth of a sleepy, low teenager. No more remembering to test, no more worry day and night when he wasn’t with me, no more remembering to make appointments. I was you for a decade: the tired, worried parent who felt 90 percent of the population didn’t really understand what we went through as the parent of a person with type 1 diabetes (T1D).
My perspective I imagine is quite unique. Not many can say diabetes was part of their every day life and then gone. And in the six years since his death, I still surround myself with many individuals with T1D including children at all of our Riding on Insulin camps and the many adults I call friends and teammates as well. And I am shocked in looking back at those years and realizing over time one glaring thing.
I had lost my compassion for those with T1D.
There, I said it. I’m not saying I lost ALL compassion, mind you. But slowly over time when a parent would tell me they were up three times testing their child in the night, or that the kindergarten teacher wouldn’t let their child test in the classroom, my response had changed. It was no longer quite as empathetic as it had been in the past. I mean, come on … it can’t be that hard, can it?
Then something interesting happened. One of the coaches who volunteers at our Riding On Insulin camps, Matt, was out walking his dog. About nine blocks from home Matt experienced a severe low. He hadn’t noticed the alarms going off and Matt came close to passing out. It was the first time Matt realized he should have a bit of a life line. He made the decision to add me to his Dexcom share app. I’m sure by now everyone is familiar with the share app, but if not, a brief description: An individual on the Dexcom continuous glucose monitor (CGM) can share their data with up to five individuals via smart phone. What that means is I get a real-time blood sugar number on Matt whenever I choose to look at my phone. If his blood sugar goes above a certain number, say 250, I get an alarm. If he drops below 70 I get an alarm. But the real setting that matters, the one that alarms if he drops below 55, that’s the one that puts me in a slight panic. Mom panic.
Frankly, I was really honored when he asked me. Diabetes was invited back into my life on a very personal level. The level that scares each one of you when you go to bed at night. And then to my surprise my coworker, Dustin, added me to his Dexcom share too.
All of a sudden I was the proud parent of two adult T1Ds again.
Then the alarms started in the middle of the night—the sound of a baby crying. No, LITERALLY! When their blood sugars dip below 55, the alarm is the sound of a baby crying loudly. And I have to say, it is something that shoots you straight out of your sleep and into “mom mode.”
My protocol with Matt is to text him and say, “Are you okay?” If I do not hear from him (and my panic button is pushed a little harder) I call him. If he does not answer then I’m calling 911. There I sit, the worried “mom,” living three hours away, feeling somewhat helpless waiting for his response. Trying to stay awake for 15 more minutes to see his blood sugar go up—or down. Waiting another 15 minutes. Setting my alarm for an hour later to make sure it’s still going up. I’m so tired when Matt is having a tough night of battling a low and I have to be up early in the morning. And the realization comes:
THIS IS HARD: BEING A PARENT OF A T1D.
I remembered quickly to empathize with all of you, the exhausted parents. It also reminded me that the general population really cannot understand exactly what you go through every day in managing the lives of those you love. My hat is off to all of you and all you do for the T1D in your life. As for Matt, I continue to feed him virtual teddy grahams through my smart phone when he’s low. His response? “Yum … teddy grahams.”
Read Jesse Azswager’s Cause of Death and Ironman—A Woman’s Continued Advocacy for her Son by Michelle Bauer (Alswager).