There is no such thing as perfect parenting when it comes to raising a child with type 1 diabetes. Even so, it’s easy to feel like a failure. Every mistake, every misstep can feel like we’re failing our children. That’s on top of all the numbers that can feel like a report card, not just every three months, but with every BG check and every five minute CGM update.
Enough.
I’m here to tell you to make all those mistakes. It’s how we learn. It’s how we grow. It’s how our children become more confident, resilient and independent. I feel so strongly about this, that I wrote a book: “The World’s Worst Diabetes Mom”
Reader Review for “The World’s Worst Diabetes Mom”
When my son was diagnosed with type 1 in 2006 the thinking was more about living well with diabetes; we were taught to pay attention to numbers, of course, but to not let them run our lives. Over the last 13 years, I’ve noticed a shift. More parents are trying to have their children live perfectly with diabetes. I know families who keep kids home from camp or sleepovers for fear of out of range numbers or who restrict their own activities because another caregiver may mess up the “perfect” CGM graph.
The World’s Worst Diabetes Mom is a parenting advice book and a memoir of our family’s years with type 1 diabetes. It also brings up topics and themes to talk about with your care team – each chapter has an “Ask Your Doctor” section to make that easy. You can buy the paperback or eBook on Amazon (Click here) and other retailers. It’s also available on my website. (Audio-book coming soon!)
Click below to read reviews. Then head to Amazon and add your own!
“Biking across the country is literally the stupidest thing I’ve ever heard of. Why would you do that?”
Hard to believe the man who said those words, is the man behind the idea that became Bike Beyond. But yes, Walt Drennan had the idea that led to that incredible event. In the summer of 2017, 20 people with type 1 diabetes cycled from New York to California.
Walt explained his comment to me on Diabetes Connections when I interviewed him and Beyond Type 1’s Sarah Lucas two years ago as they kicked off Bike Beyond. Now that the amazing documentary about this cross country ride is streaming on YouTube I thought it would be fun to take you back to how it began.
Click below to listen, or head on over to this link. I interviewed almost every biker that summer and followed them to the finish line!
(The player below is set to start at 13:17 as that’s when the Bike Beyond stuff begins. You can certainly back up the player if you prefer)
Here’s the documentary, newly screening on YouTube. Credit to filmmaker Neil Greathouse for his incredible work.
The last few months have seen a lot of transitions for my family. Back in May, we celebrated my daughter’s high school graduation. In August we took her to college and said goodbye. Just a few days after we got home, Benny started high school.
As I sit here in my now much-more-quiet house, I realize in four short years, Benny will be the one graduating from high school and getting ready to move out. In “real life” four years goes by in a flash, but in “diabetes life” four years can seem like an eternity. You know why, right? That’s the time we associate with being locked in an insulin pump warranty.
Benny started on an insulin pump when he was two, about six months after diagnosis. I remember hearing about big changes coming to that pump system and being very frustrated that we had to wait. We were actually pretty lucky to be on the tail end of our four year warranty, but it took more than a year to wait it out, process everything and get the new system mailed to us. That’s one reason why we switched to the t:slim X2 pump from Tandem Diabetes Care. It’s the only pump currently offering remote software updates. I loved the idea of getting new features as soon as they were available, and easily from home.
The timing worked out so that we did our first update about a month after we received our t:slim X2 pump in 2017. That’s when Tandem integrated the Dexcom G5 Mobile CGM. I plugged Benny’s pump into my computer, did the software download and handed it back to him; it took less than 15 minutes. Same thing with our Basal-IQ technology update a year later. Once we had the prescription from Benny’s doctor, it was a quick online training session, a download to the pump and we were finished. Even better, both updates were free to us, as in-warranty customers.
I was thrilled to hear that Tandem is continuing that free service; diabetes is expensive enough! All software updates released through 2020 are free to in-warranty t:slim X2 users in the United States.1
A lot can change in four years. In 2015, Lea was 14-years-old and just starting high school. Now she can drive and she can vote and she’s starting the newest adventure of her life 700 miles away. Four years ago, Benny was in fifth grade and was the shortest one in our family. Now he’s almost as tall as my 6’1” husband! I’m grateful to be with a pump company that can keep up with us.
As I look ahead, in 2023 Benny will be 18 and probably off on his own college adventure. I’d love to slow things down, but that’s not how it works. Honestly? I can’t wait to see what happens next!
Four years ago. Look how little Benny is!Lea and Benny this year
Stacey Simms was compensated by Tandem Diabetes Care for her contribution on this topic. However, she created the content, and it is based on her personal knowledge, experiences, and observations.
1Additional feature updates are not currently available for the t:slim X2 pump with Basal-IQ technology and are subject to future FDA approvals. A prescription and additional training may be required to access certain future software updates. Offer only available to customers who reside in the United States, who are in warranty at the time they update their pump and who purchased a t:slim X2 insulin pump on or before December 31, 2020. Tandem may discontinue select software and features over time at its discretion. This is a limited time offer and Tandem reserves the right to discontinue this program at its discretion.
From time to time, we may pass along suggestions, tips, or information about our experiences or approaches to the management of diabetes. However, please note, individual symptoms, situations, circumstances, and results may vary. Please consult your physician or qualified health care provider regarding your condition and appropriate medical treatment.
Important Safety Information:
Federal (USA) law restricts this device to sale by or on the order of a physician. The t:slim X2 insulin pump with Basal-IQ technology (the System) consists of the t:slim X2 insulin pump, which contains Basal-IQ technology, and a compatible CGM. CGM sold separately. The t:slim X2 insulin pump is intended for the subcutaneous delivery of insulin, at set and variable rates, for the management of diabetes mellitus in persons requiring insulin. The t:slim X2 insulin pump can be used solely for continuous insulin delivery and as part of the System. When the System is used with a compatible iCGM, Basal-IQ technology can be used to suspend insulin delivery based on CGM sensor readings. The System is indicated for use in individuals 6 years of age and greater. The System is intended for single patient use and requires a prescription. The System is indicated for use with NovoLog/NovoRapid or Humalog U-100 insulin. The System is not approved for use in pregnant women, persons on dialysis, or critically ill patients. The pump is not intended for anyone unable or unwilling to: use the insulin pump, CGM, and all other system components in accordance with their respective instructions for use; test blood glucose levels as recommended by their healthcare provider; demonstrate adequate carb-counting skills; maintain sufficient diabetes self-care skills; see their healthcare provider regularly. The user must also have adequate vision and/or hearing to recognize all functions of the pump, including alerts. For detailed indications for use and safety information, visit tandemdiabetes.com/safetyinfo.
When my son was diagnosed with type 1 diabetes just before he turned two, I had a lot of thoughts about his future. Getting pregnant wasn’t among them. But as we shared the news and explained type 1, a few friends said, “At least he won’t end up like that poor girl in Steel Magnolias.”
What?
It’s hard to remember but through all the great dialogue and amazing women in the movie, the center piece of Steel Magnolias, and the impetus of that wonderful “laughter through tears” line, is that the Julie Roberts character dies from complications of type 1 diabetes. “Drink the juice, Shelby” is her mother desperately treating a dangerous low blood sugar.
I love Steel Magnolias. I had a huge crush on Tom Skerrit back in the day (omg, I know) and I cry and laugh every time I watch it. But I know people in the diabetes community who get angry, who won’t ever watch it again.
It is a true story. Robert Harling wrote the play after his sister died in 1985. It can still happen; fortunately, it’s not the story of most women today with T1D who want children. The problem? For the most part, Steel Magnolias is still the only story out there.
It’s a wonderful round table – they all have strong reactions to the story, but they also have terrific advice for women with diabetes. We get away from Steel Magnolias a lot (cheeseburgers come up for some reason?) and they share real-life pregnancy and T1D stories and experiences from which we can all learn.
Melissa Lee put her finger on it late in our discussion when she pointed out that Shelby had no community. She had no one to truly listen and understand, to say yes and to help her find a way. I hope hearing this round table helps you find your “yes.”
