Moira McCarthy is first and foremost, a mother to daughter Lauren, who was diagnosed with type 1 diabetes at age 5. She’s also a writer, author, and public speaker who has shared her experiences and knowledge on raising a child with type 1 diabetes through books and on her blog, DespiteDiabetes. McCarthy is known for her intense combination of straight-forward and stern yet continuously compassionate advocacy and wisdom on raising a child with diabetes. You can learn more from with her latest book, Raising Teens with Diabetes: A Survival Guide for Parents.
Your daughter was diagnosed with type 1 diabetes more than 17 years ago…what would have been different for you as a parent taking care of a young child with diabetes if today’s technology (pumps, CGMs) were available and readily used in kids like they are today?
Wow! Back then we had NPH and Regular insulin, meters that took a minute to count down and required a “hanging drop of blood.” I feel like when I tell people that I should also say “and we had to walk barefoot in the snow uphill both ways to get it!” But … things really have improved. Yet, I have what may be a surprising answer for you: I think if I had today’s technology, I’d be pushing from the start for the newest and the coolest — pump and CGM and whatever else comes down the road. And here’s the thing: I’m not sure that’s best for the parent or the child. There is something about having to learn the physiology of shots and checks and how insulin works in the body that I think gives you an excellent foundation for living life with diabetes on board … and I am not quite sure parents of newly diagnosed kids get if they go to a pump that tells them how many carbs something has and estimates the insulin on board for them.
I also think a CGM (continuous glucose monitor) — which my daughter loves, by the way — can be a confusing tool that leads folks to overreaction if they are not yet in tune with how their body works with diabetes. Heck, my own daughter, who really knows her diabetes has found herself having more lows from overreaction when she was first on her CGM. A really famous diabetes researcher who has had T1D most of his life told me the first time he ever had a low requiring assistance was after he went on a CGM. Now, he and my daughter reminded themselves that there are certain things about their diabetes that they just know, and that they are smarter than even the CGM. But how is a newer parent to diabetes supposed to know that?
I am not saying tools that do great things are not awesome — they are — but sometimes I worry that newbies are getting too technologically advanced too quickly. Maybe it should be like driving a car. You start with a learner’s permit and someone has to oversee (or you start, really, by riding a bike as a kid and getting to know the roads etc.).
I also think another piece of technology is wonderful yet tricky: the internet and Facebook. I’m telling you, it would have been amazing to have the instant support you can find out there back when my child was diagnosed. But it might have confused me and scared me. I tell parents of newly diagnosed kids all the time: Be very selective about what you read on the internet. It’s not all true, and some of it is people looking for attention. Life with diabetes is very hard and extremely challenging…but it’s not the dire, sad, horrid life some post about out there. I think I might not have had the same vision of “It’s going to be okay!” I had back then thank to our endocrinology team, had I been able to cruise the internet.
How did you go about balancing or dividing the responsibilities of your daughter’s daily management between you and your husband?
Oh, that’s kind of funny. Divide? Ha! Let me start by saying: this was all my fault and let what I did be a cautionary tale to all. Because I was pretty sure from day one that no one, even my husband, could take care of my daughter’s diabetes the way I could. So I owned it. And kind of pushed him away from it. And it was so easy for him to just let me (heck: I would too if someone tried to push me away! Diabetes is hard work!). So it very much became my job and role — and I worked full time just like my husband! But there was the thing: I travel for work. And this was back before cell phones and even pagers for a while. So when I went on the road, it had to be his job.
At first I’d come home and freak out because he had not color-coded the logbook the way I liked. And then her endocrinology talked to me about it. Here is what he said: “Moira? It’s his right to have his way of doing things, and your way is not the only right way. So long as I am okay with things, you need to be too. And I am. Let him do it his way. And when you get home, just move forward. Don’t go back and review to “test him.”
So I did. It took a lot of self-control from this control freak, but by changing my goal from “the logbooks aren’t color coded etc. etc.” to “She’s alive and smiling,” it allowed my husband to reclaim his equal role in my daughter’s life. And now as an adult she and her dad are BFF’s, so it’s all good.
What aspect of parenting a child with type 1 diabetes do you feel is still under-acknowledged or under-addressed healthcare professionals? Where can they improve how they support parents of children or teens with type 1?
I have two answers:
1) FEAR. From what I see and hear (and lots of parents reach out to me for information and help, so I see and hear a lot from others, too), we are improving our tools, our insulin and our data, but parents are getting more afraid than ever in the past. I honestly feel it is the #1 “Complication” facing parents of kids with diabetes now, and it spreads into the kids. Moms tell me their children are afraid they are going to die in their sleep. Parents are afraid to let their kids go off and play or sleep over or anything. I’d love to see healthcare professionals address that in both a one-on-one and a large scale way. Help parents — and patients — see that they really are going to be okay; that T1D is not going to kill them in an instant (or that it rarely, rarely does that). Maybe do some true studies on deaths and show real stats as well as causes to help ease minds. It breaks my heart, and kind of makes me glad my daughter was little before this kind of terrible fear was gripping so many, because I know if we were new to this I’d be right there in that fear.
2) Transitional care. I think we are really great as a society at treating kids with T1D, and are really great at treating adults with T1D. But that shaky time in between? We need to focus on it. I know some practices already are — Dr. Jake Kushner at Texas Children’s is all about finding the solutions to this. So is Dr. Howard Wolpert of Boston. The teen and transitional years are tough anyway; we need to find a way to treatment that makes it better for all. I’m quite passionate about it and doing my best to help make that happen.
What piece of diabetes technology do you feel is the most life-changing for your daughter today? If she had to choose only one device to keep, which would it be?
My daughter was the first young child in the Boston area to go on an insulin pump back in the day, so we are big technological folks. She also went on the very first Minimed CGM (anyone remember it? Not the shell but the big two-piece thing. I still have it in a drawer!) and then was one of the very first to go on the “shell-shaped” MM CGM when it first came out. I feel like Kip at his wedding in “Napoleon Dynamite:” “I love technology…lalalalala” (extra points if you get that).
But I also learned as time went on that technology was only as good as her embracing of it. So when she came flouncing out of her endocrinology appointment three years ago waving a pen at me and saying “guess what? I’m on shots!” I did my best not to freak out. She’d been pumping for 12 years (she’d only stayed on that first CGM for a year, by the way) and said she just needed to “shake things up.”
And you know what? It turned out fine. She was in her own transitional time and she — smart girl — realized that all she really ever knew was the pump. She decided if she went back to basics somewhat, she’d be forced to pay more attention to her diabetes and learn (or as I said above — build her own foundation). It all turned out fine. She did go back on a CGM and is quite happy with it now, finding it helps her fine tune things with less stress. And since she is a young adult, it also gives her some peace of mind after nights on the town.
So while I’m a huge pump advocate, for now I’d say the CGM.
There is one other piece of technology though that folks take for granted today that was incredibly transformational for us when it came out: Ketone meters. Wow. The difference in knowing what ketones are during sickness up to the moment instead of a few hours off literally changed our lives. I’ll never forget using it the first time. It’s an incredible tool and insurance should better cover strips for it for all.