Moira McCarthy Stanford might be a new D-mom blogger, but she's been around the block and beyond advocating for diabetes. A former National Chair of Outreach and long-time supporter of the JDRF, Moira and her daughter, Lauren, have made headlines numerous times for their work advocating for a cure.
Life hasn't been easy for Moira and Lauren, and she says they've learned many things the hard way — thus Moira has some strong opinions on how to handle a child's diabetes. Today, she shares why she thinks the "helicopter" approach is no good, as quality of life is important too!
A Guest Post by Moira McCarthy Stanford
I had just been the keynote speaker at a diabetes event, and as is always the case, a mom approached me to talk D-parenting. Her 15-year-old daughter, who has had diabetes for three years, had just gone on a CGM. And in the six months since going on it, the mom said, her A1c had risen to "an alarming level."
I listened as she vented. "It's up to 5.8. And that's with still checking 15 to 20 times a day. Do you have any thoughts?"
Of course I did. Thankfully, I kept them to myself.
Because my first thought was "A 15-year old who allows you to check 15 times a day? 'Up to 5.8?' Unicorn alert!" My second was "Wow, that sounds like child abuse to me."
I found some kind of way to say something polite and move on. But the discussion left me shaken. Okay, it left me steaming.
Because look: I get it. We parents want to be the diabetes slayers. With all the tools we have available today — meters and CGMS and all kinds of rapid-acting insulins — we want to do all we can to keep our kid's blood sugars in range, their A1c's low and, hopefully, keep complications at bay.
I truly get it. There is nothing I want more than to know that my daughter will live a long, healthy, active, complication-free life.
But: at what cost? And by that I mean at what cost to her, to me and to our relationship as a whole?
I think I was lucky in a way. When my daughter was diagnosed, there was no rapid- acting insulin, and the world was still trying to get its arms around tight control. That said, I bought into "tight control" from the start. But for us, back then, that meant four to five blood sugar checks a day (unless she was low, high or sick, or it was an unusual day in any way). Her range was from 80 to 200, and her A1cs, even with that "little" amount of work (by today's standards) were almost always in the 6's. I can distinctly remember freaking out once when it was 7.1. (Oh, those were the days).
When she went on a pump I did night checks for a few weeks (at our CDE's suggestion) but after that, I really only did night checks if she was sick, was doing basal testing or had some kind of very unusual day that concerned me. I usually checked her when I went to sleep (say between 11 and midnight) and then not again until morning.
She's never had a seizure in bed. Yes, she's awoken up high, but we've fixed it. I pretty much felt like I was doing a good job as a D-Mom. And I kind of liked that I was showing her, through my example, that you can be a parent, battle a disease and have a life all at the same time.
Lately, I don't think that kind of balance is possible for new parent entering this D-world. Because there's this sudden and new push — a push that seems to be telling parents: you must check a dozen times a day or more! You must wake two or three times a night to check their blood sugar! If they wake up at 200, you have to freak out and study and worry, figuring out what went wrong.
This reminds me of one day in elementary school when Lauren checked and was 225. The nurse said "Why are you 225?" To which Lauren responded, "Because I have diabetes." Ummm, yeah. Sh** happens. It seems to me diabetes is consuming these parents. And I wonder if that is really what is best for the child.
Because I've always thought it is our role as parents to raise well-rounded, happy children. And again — I get it. I would give my eyeteeth for my daughter's A1c to be in the fives. But giving my eyeteeth would not impact her in a negative way. (She'd have to be embarrassed by me clicking my dentures in and out but other than that . . . would not touch her world.)
I have to think that waking her up multiple times every night would have a negative impact on her (and don't fool yourself that your child is getting a full night's sleep if you do this). I have to think that making her check every two hours during the day would be negative as well. Look, the plain, simple truth is diabetes can never be completely mastered (well, not yet. Bring on the APP!) If we parents are freaking out every time our kids BG's are a bit out of range, what message are we sending them?
And I have to think that not letting our kids see that indeed, they can just have fun for, oh, say a half day without stressing in a real way about diabetes, might just lead them to resent the disease even more than they already do. Are there going to be days diabetes takes over completely? Sure. You cannot avoid it on sick days. You have to do fasting
basal checks from time to time. And pregnancy? That's a whole different thing. But regular, daily living? Why can't we parents work to help our families find better balance in this diabetes world?
I've felt the intoxicating pull of tons of numbers. When my daughter first went on a CGM, I positively drooled at the pie charts and trends and averages I could see. I started hemming and hawing over a few hours of a high here and there. And then her endo warned me: that's a dangerous road to go down. He encouraged me to not look at the charts too often, but to use them more as a "big picture" thing than a chance to micromanage and nitpick. "Otherwise," he said, "Things are not going to be great for you or for her." I tried to distance myself from that informational pull. Because, truth be told, even CGM's cannot beat diabetes. Yet.
I think diabetes is an easy thing to get lost in. Look, we want to be our children's heroes. We want to keep them safe. We want to raise them to live long. But maybe, just perhaps, it would be even more heroic to take a deep breath and brave it out from time to time. Show them how to live despite a disease and not always because of it. Let them see a mom or dad who is not exhausted, worried and afraid.
Because you know what? There is going to come a time when they'll venture out without us. We want them to be self-assured. We want them to be relaxed. We want them to be confident. We want them to be happy. We don't want them to have diabetes at all but if they still do, we certainly don't want diabetes to completely have them.
Do we? To the newer parents I say this: I salute you for your willingness to give your all to your child's well-being. I encourage you to talk to your medical team about dialing it down a bit. And I understand you completely. Now, step away from the meter. And get a night's sleep from time to time.
What say you, Parents and PWDs? Is intense monitoring a good thing or does it actually hinder children?