My heart was pounding in my chest, my brain felt about to explode, and I was almost sure that my then-high school child with type 1 diabetes (T1D) was never going to make it through life.
That was 11 years ago, when I shared my story about struggling as a parent of a teen with diabetes here at DiabetesMine.
Looking back, I realize how broken we were then. How worried I was. And because I can see that thousands still read that story and still relate to it today, I feel like it’s time for a follow-up.
In short, my daughter, Lauren, and I have successfully weathered the difficult transition from the rocky teen years to young adult years with diabetes. It wasn’t easy, but today we’re good. In fact, we’re great.
Back then I shared some horrible experiences: Shortly after receiving her college acceptance letters, my daughter landed in the ICU and almost died. The endocrinologist had to lay down the law that she might not be going anywhere if she couldn’t get on top of her diabetes.
Today, she not only completed university with flying colors and is off to an amazing career, but our mother-daughter relationship is stronger than ever.
How did we get here?
A week or two after that ICU experience, and just 2 months ahead of my daughter’s scheduled departure for a big university some 500 miles away, we were floundering, and I was pondering pulling the plug on that far-away college.
That endo’s threat turned out to be a blessing — but not for the reason you may suspect.
What happened was that it triggered an epiphany in me: I realized that stopping my daughter’s forward progress in its tracks until diabetes got in line was actually not the solution.
After the endo’s assertion, my daughter did begin checking her blood glucose (BG) levels more often.
But it also hit me: There’s no magic switch to flip when it comes to turning around diabetes burnout, nor is there a “set it and forget it” way to transition you both into the next era of your diabetes parent-child relationship. (If only!)
And then almost by accident, I pretty much stumbled upon the first tool I’m going to suggest parents (and teens) have: the sage advice of adults with T1D who have been there.
I was attending my first Children with Diabetes Friends for Life (FFL) conference, alone and as a faculty member. With some time to spare, I wandered into a learning session on college and diabetes, meant for the students, not the parents. I wanted to listen.
When they asked if anyone had a situation they needed input on, I tentatively raised my hand and asked the presenters — and the room — what they would do in my shoes.
I read from my phone what the endocrinologist had said to me, and the reaction in that room was swift, strong, and unanimous:
Time for an adult endo.
In fairness, my daughter had suggested this as well, saying, “I’ve grown out of the clowns and toys in the waiting room, Mom.”
But Mom was comfortable there. After all, that pediatric diabetes center had brought her from her kindergarten diagnosis to, at that time, the brink of college.
But the folks in the FFL conference room told me that that endo was out of line in what she said. I should erase it from my mind (yeah, I thought, but it’s etched in my soul), and, instead, let my daughter find an adult endo who understands the transitional years.
After all, transition from pediatric to adult diabetes care is an increasingly
Lucky for us, the FFL session leader suggested an endocrinologist in our area who could see my daughter. That first appointment was a lesson to me, as well as to Lauren.
Here’s what we both learned that day:
Me: My role was changing. It was time for me not to just understand that, but help it be a reality. I drove to the diabetes center with my daughter but didn’t go into the appointment.
Her endo did come out and tell me that my daughter had agreed to let me ask some questions, since this was a first appointment. I jumped at the chance, of course.
I had just one burning question: Would you send someone with her A1C to a college 500 miles away? (My stomach churned. What if he agreed with the other endo?)
“Oh,” he said, with his dry humor that I later came to appreciate, “I knew they checked ACT scores, but I didn’t know they checked A1Cs when they decided to admit kids to college.”
Touché, I thought, and clarified myself:
“OK, then, let me ask this way: Would you let someone with her lack of attention to her daily diabetes care go to college 500 miles away?”
He smiled and said, “Great news! I’ve developed a test to see if she is ready. Shall I test her?” (Yes! I screamed in my head. YES!). Then he turned to my daughter and said, “Do you want to go to college in Washington, D.C.?”
“Yes,” she answered, looking him in the eye. “More than anything.”
“Mom,” he said to me, “I have the results of the test. She should go.”
Talk about a clever, simple and vital lesson: It was time to let my child call the shots, both literally and figuratively.
What did my daughter learn that day? She learned that if she was going to take control, she had to be forthright about her own wants and choices — Mom’s wants be darned. (This isn’t always easy for a young adult.)
Later, with me back in the waiting area, Lauren sashayed out and declared, “I’m going back on shots! And I feel GOOD about it.”
Gulp. She’d been using an insulin pump for more than a decade at that point. Shots? In college? (Remember, Mom, I thought: She calls the shots, even if it is for shots.)
And so, that August, I dropped her off at university with her syringes, insulin vials, and enough snacks to, as she put it, “allow every person with diabetes in D.C. to have low blood sugars in my room at the same time and be covered.” All that, and her thirst for learning were ready to go.
I drove away hoping that my plan (which came from advice from more adults with diabetes) would work. Since I was paying for said university, I had laid out two requirements for her: She should come home with “relatively good grades and in relatively good health.”
And here’s the kicker. It was up to her to define what that looked like.
In other words, I didn’t give her an exact A1C (or GPA) goal she had to reach. I didn’t require she check her BG a certain amount of times a day. I didn’t demand she share the numbers with me.
Why? Because it was officially time for her to run her own diabetes care and discover just what she felt was acceptable and how that could balance in her life.
I’d done my job for the dozen years I’d been her diabetes mom before that day (and the 5 additional years of parenting her before diabetes). Now, it was her turn to adopt what practices she chose from me, and to create those she wanted on her own.
My goals, her goals. Off we went.
The one thing I’d asked her to do was to check in every morning when she started her day (my thinly veiled attempt to have a way of knowing she was OK).
That next morning, my first day officially living far away from her and her diabetes, I got that text, as I did every day thereafter.
“Good morning Mom!” It read, almost joyous in its tone. “I didn’t die last night!”
See? She did adopt some of what I taught her all those years. In this case it was this lesson: Humor helps everything.
It was good we were so far apart because we both had some work to do.
Here’s what I had to work on:
Stop the nagging, stop the nagging, and stop the nagging
I’d been told this before, but it’s a hard habit to break. Now that she was transitioning into adulthood, whether she took her bolus insulin dose or checked her BG or changed a pen needle or whatever was no longer my concern.
Nagging would do no good, and I had to cut it out for good.
There were things I helped her with for a few more years, like prescription refills (I was still paying; it was just easier for me) and helping her make appointments around when she’d be home.
As college morphed into working life, though, even those became things I had to not just let go of, but try not to worry about.
I’m still working on this. Particularly in the COVID-19 pandemic, I found myself obsessing over whether she had a back stash of insulin just in case, if she’d seen her endo recently, and if her scripts were up to date.
To be honest, I backslid in my nagging over all that. Which was when we both had more to learn. For her, that maybe a *little* more info for her mom might be the humane choice. And for me, that again, it’s up to her to share or not share.
And I needed to recognize that not sharing had nothing to do with her loving or respecting me. I still have to say that out loud to myself from time to time. Along with: Stop the nagging.
She controls the narrative
In other words, we talk about diabetes when she wants to.
When might a parent “intervene” with an adult? This is how I’m framing it: if she’s truly endangering her life.
No, I don’t mean by possibly forgetting to dose insulin and having a single high blood sugar. I mean, if I, say, see signs of an eating disorder, depression, or another serious co-diagnosis.
And even then, which thankfully we’ve not had to face yet and we hope never will, I’d have to seek some input from other adults with diabetes on how to best handle it.
It’s hard not to ask, and to be honest, I hope someday I can freely ask again. But for now, that’s what my daughter needs. So, I’m in for letting her decide when and how we discuss diabetes (and yes, that makes my eyebrow twitch still).
Accept that someone else may take my ‘diabetes place’
My daughter has yet to find love, but she has her “diabetes SO (significant other) role models,” and I know she’d like to be in a relationship with someone who would give her backup and support.
I’m over here raising my hand wanting to yell, “I will give you backup and support forever!” But this is what I have to understand: It’s normal — even super healthy — to want someone other than your mother to be your support and backup.
This isn’t that hard a stretch for me. I think I’ll rather love it when she finds this soul.
But for now, I have to keep reminding myself that she does call me all the time, and sometimes she even asks for diabetes input.
It’s her diabetes, her story, and her life
True, when she was a tiny little thing dealing with all this, it felt like both of ours. But the reality is, it never was. And it should never completely be.
It’s extra important as our kids transition to adulthood that we not only remember that, but honor it.
When I decided to write this follow-up, my first step was to explain to her what I wanted to write and ask her permission to do so. (Her diabetes, her story, her life.)
She said yes. And she said this: “Thanks for asking me, Mom. That really means a lot.”
She reviewed this article and gave me input before it published.
My daughter is doing really well right now. Her career is incredible, beyond anything I even imagined, and she’s only a few years in. She lives in that big city and has countless friends. She has hobbies, social groups, and interests.
And her health? As her endo said to her a year or so back, “You have the labs of a person without diabetes.”
Twenty-four years of T1D, struggling teen years, and she’s OK. I’m so glad I found that group of adults at the FFL conference who steered us in the right direction.
So, you may wonder: How did that adult endo know it was going to end well?
At a small dinner party we both attended a year or so ago, I got to ask him that question. Knowing my daughter wouldn’t mind the discussion, he explained.
“I like to bet on sure things, Moira,” he told me. “And the only sure thing here that I could see was that if you stopped your daughter from living the life she imagined because of diabetes, she was going to end up resentful, unfulfilled, and blaming it on diabetes. Did I know she’d turn it around like she did? No. But it was the clear choice.”
She’s 29 now, and while we’re still working on our “adult with diabetes and mom” relationship, we’re all good. We’re close. We laugh about things all the time; she shares all kinds of things about her life with me.
We have a mutual respect, and now I’m rather proud of that mom who was so broken that morning 11 years ago.
That parent evolved. She pushed past her own needs and fears for her kid to thrive. Which was always the plan. We just took some side roads to get there.
Moira McCarthy is a Massachusetts-based, award-winning news reporter, magazine feature writer, and author. A passionate advocate for type 1 diabetes, she was named the JDRF’s International Volunteer of the year. She is author of “Raising Teens with Diabetes: A Survival Guide for Parents” and is a nationally known speaker on diabetes advocacy and life with diabetes.