There are a few things you should probably know about Dawn Culver-Henkel:

If caring for others is a superpower, she belongs in the Marvel Universe.

She will make you laugh. And maybe cry a little.

She really loves her FreeStyle Libre system CGMs (continuous glucose monitor). All of them.

Not like she loves her grandkids — more on that later — but in her world, knowledge is power. She respects the power her original monitor gave her, as well as the additional features of the FreeStyle Libre 2 system. Soon she will be enjoying her new FreeStyle Libre 3 system because, “it’s even smaller and gives information even easier than the other ones. And the other ones were great.”

But her own diagnosis three years ago was not the start of her diabetes journey. That began with her parents, siblings, and then when Kristin, her firstborn, was diagnosed with type 2 diabetes at age 13. Significantly, this was not Kristin’s most pressing medical challenge as she was born with a rare congenital condition, Prader-Willi Syndrome, that results in a compulsive need to eat, numerous physical limitations and a reduced life expectancy.

As Dawn dealt with Kristin’s daily challenges — including putting locks on the refrigerator and pantry to thwart her never-abating hunger — she was also raising her younger children, Elijah and Gabriel as their primary caregiver, holding the family together in the face of numerous pressures.

Those pressures increased with Kristin’s diabetes-related needs added to those of her underlying condition. Both mother and daughter hated the seemingly never-ending finger-pricks and the constant need to manage insulin. It was a series of daily challenges to be met in a lifetime of other daily challenges, laid on top of the daily challenges of raising two growing boys.

Darkness Emerges

Dawn managed to hold her life and her family together even as Kristin’s health began to deteriorate further during her early- to mid-20s. Prader-Willi patients often do not live into their 30’s and Kristin was placed in a nursing facility at age 26 to care for her expanding needs.

“Kristin was very sick and looked like she’d be in a nursing home for quite a while,” Dawn said. “Between visiting her, work and raising the boys, I felt I didn’t have enough time in the day.”

So Dawn opted for the caretaking-est choice a caretaker could take.

“I thought if I was working in the nursing home that she was at, I’d have more time with her.  Maybe I could be a CNA (certified nurse assistant) like the women who cared for her. One of them told me about this CNA academy, so I decided to enroll, with the idea that I would work in that position, near Kristin, for as long as she had. I felt like it gave me 30 hours a day instead of 24.” 

If 30 could fit into 24, Dawn would make it so.

Strongly encouraged by her CNA instructor to go onto a full nursing program, Dawn talked to Kristin about the constant prodding she was getting to move forward. Kristin had thoughts on the subject.

“She said, ‘You should do it, mom, you’d be the best nurse ever. Look how good you’ve done taking care of me all these years.’ It was then I decided to attend nursing school.

“The school was pretty tough but I made it into an accelerated program with a scholarship because I couldn’t otherwise afford it. I would spend as much time with Kristin as possible, often falling asleep studying with my head on her knees."

But all the efforts and opportunities to be with Kristin were coming to an end.

“The program was very rigorous, but I was still surprised when they refused my request to postpone my final because Kristin’s condition was worsening fast. I would have to take the test or be dropped from the program. Kristin told me I needed to take the test, so I did.

“I handed in the final, walked quietly out the door, answered my sister’s call and learned my daughter had passed away. I slid down that door in the hall and just collapsed.”

Dawn’s Early Light

It took four more dark years, during which Dawn cared for her dying mother and stepfather, for the EMTs to arrive. But they were exactly what the doctor ordered.

“I call my twin grandchildren (now closing in on 12 years old) my ‘little paramedics’ because they brought me back to life. I didn’t realize how dead I was inside until they breathed life back into me.”

Joined later by their sister and Gabe’s son — all living within about eight miles of one another — these first two heart-starters signaled the start of a brand new Dawn. One that had no interest in slowing down or taking it easy. Not with these second through fifth chances waiting to be cashed in.

And it was no secret. “My son told me, ‘I’m so happy to have my mom back.’” Dawn was cool with it as well. “We see each other way too much I’m sure. I super like my kids and grandkids and some folks are surprised I watch them all, as much as I can. But that’s me. They are my world.”

Next Up

However, as anyone who has seen a quality Netflix limited series know, we still have a couple of episodes left to go in this one. And we are proudly sponsoring the finale.

It was early 2020 and life was good with Dawn. Happily remarried to a wonderful man, with her sons and beautiful grandchildren nearby, seeing them most every day — which is almost enough days to suit her.

After a routine physical, however, she learned her blood sugar was over 600 and her A1C at 12.8 (high end of normal for a woman of her age are about 140 after a meal and 7.5, respectively). She was diagnosed with diabetes and within 3 days, she noticed her vision was getting noticeably worse.

“I don’t know why I was surprised. I was eating 4-5 meals a day and popping candy like an addict, going out to dinner most every night, which sounded like a good idea until I realized it wasn’t. I knew the numbers were bad and I’d cared for a diabetic for 14 years so I knew the blurry vision was likely related.

“I was scared and felt like I was facing my mortality. First thing I thought of was I want my grandkids to make good choices and grow up healthy. I don’t need much more out of life than to see that and be with them. I realized I had to change some things so could have at least another 20 years with them.”

Knowing the Impact

It was time for Dawn to take care of Dawn.

Remember her belief that knowledge is power? Dawn needed information and went out looking for the best solution for her.

Her efforts soon found her on the phone with an Abbott representative. “She was very nice and explained everything, answering all my questions. I was so relieved when I started using the original FSL system I couldn’t believe I didn’t have to prick my finger¹ because that was such a big and awful part of Kristin’s experience, so much so that her brothers and I would often prick our own fingers to better appreciate what she was going through."

The FreeStyle Libre system has had a profound impact not only on Dawn’s diabetes management but how she approaches her condition. “I love that I can check my numbers as often as I like, and so easily. Knowing the impact of what you are putting in your body is having on your body can’t be overestimated.  It’s everything.

“I feel powerful. I’m learning the effect of everything I eat and all my exercise on my numbers, so I’m confident making decisions.

“I went some unknown amount of time with elevated blood sugars and no idea something was wrong. Nothing set off an alarm to warn me, but this FSL2 system literally has an alarm that allows me to sleep comfortably at night because I know if something is wrong it will let me know. It’s like being shaken awake by someone who loves you.

“There is such a comfort in knowing you are safe. When I learned about my diabetes, I felt shackled, and now I have these freedoms. There is an overwhelming sense of joy when you are untied.”

End Credits — For Now

There are a few more things you should probably know about Dawn Culver-Henkel:

She retired from active practice as a licensed vocational nurse, but still maintains her license so that she has more opportunities to care for others as needed.

She is still actively lobbying for an eight-day week of 30-hour days so she can spend more time with her family.

There is much more to her story than we could share here. Maybe we can catch up when chronicling her experiences with FreeStyle Libre 147 …

References

¹ Fingersticks are required for treatment decisions when you see Check Blood Glucose symbol and when your readings from the system do not match symptoms or expectations.