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?
I just wanted to write in and give the perspective from someone who is very new to this disease. My son was diagnosed with T1 six weeks ago. He is seven years old. I have just finished reading Moira’s post and everyone elses. Even though I have been told not to read too much on the internet right now, I do and freak myself out every few days. Just when I think I am in a good place with being able to manage this disease for my son, I read something that makes me wonder. After reading all of the posts, including Moira’s, I realize that what my husband and I are doing is going to be different than other people but if it works for us and we are following the advice of our doctor I’m not going to worry so much. I basically need to use common sense and go with my gut instinct as a mom. My doctor has already told me that I don’t need to check my son every night, but my husband and I don’t feel comfortable with that. We have decided to continue to check him every night when he goes to bed, around midnight ( right before my husband goes to bed) and at 3:00 a.m. I don’t know if and when we will feel comfortable ever stopping this routine. Maybe we will at some point, but for now this works and allows us to sleep at night more soundly. We take turns so one of us gets a full night sleep every other night. Our son is in the honeymoon phase and on two shots a day right now, which doesn’t sound a whole lot different than if he were on a pump or something else. It sounds like every day is going to be different and we will just have to do the best we can in managing each day. I’m not going to stress about it all of the time, it’s too exhausting. There are still so many things I’m still very thankful for. I’m thankful that my son feels his lows, that he really enjoys foot rubs, that we still laugh a lot, swim, play soccer, play basketball, eat pizza and pasta, and have a small cup of ice cream every day. We check him 6-8 times a day unless he feels low. I don’t want diabetes to consume his life or mine, he has too many years left, God willing, to start letting it take over now. I thank Moira for sharing her experience and perspective. I think a little more like her in that I try to be as relaxed as I can about things, even diabetes. But I also agree with other people who say each of our beautiful children are different and we need to do what is best for them. Don’t worry about what other people are doing, do what is best for you and your child. It’s also very important to treat each other’s opinions with respect and realize each of us has had and will continue to have a different experience with diabetes. I recently read a post on a T1 yahoo group from someone who had taken their T1 child to Africa for two weeks where they had no access to refrigeration. I was delighted to read that. Life goes on, let’s all live every day to to the fullest…enjoy and embrace every moment
Hi,
I’m Moira’s daughter. She will not like that I’m saying something here but I am. I think the people who are so mad are missing what mom is saying. I want you to know that she’s a really great mom. She made me check my blood tons of times for years and years and years and you know what happened? Well she wrote about it on this blog another time so I guess you do. We get really tired of it all and while it might not make sense to you moms or dads with younger kids, we actually get to a point in our lives where you cannot control us and then in a lot of cases (like . . almost ALL my friend with diabetes) we go as far the other way as we can. I have friends with eating disorders. I have friends who have died. I’m doing well now but it really is like mom said “All about balance.” I like to say i was the ‘model patient” and I KNOW my mom checked me all the time and I fell apart so I’m pretty sure most teens can have that happen.
Also, I think my mom was just using her usual “hyperbole” when she said child abuse. (but if I was a teenager and she tried to check me 15 times a day I would probably talk to my CDE about something being wrong . . . just saying!)
In any regard I just want to say to the people who attacked her here. Even if she didn’t say it right or even if you don’t agree, she’s a really great mother who has helped thousands and thousands of parents of kids with diabetes and who has been a leader in getting federal funding for research for ALL people with diabetes — whether they check every two hours or not. I’m pretty sure I almost killed HER with my rough years but she never gave up. I am doing well in college and hope to be a happy adult who lives a long, long life. That will be thanks to my Mom. She might be outspoken sometimes and you might not agree with her. But you have no right to assume she’s a horrible human being. And I know she really cares about the diabetes community a lot. Thankyou.
I see the parents of children with diabetes who are more stable, or whose numbers do not fluctuate as much, hence, feel it is safe not to test often, are still making judgmental remarks about the ones that do. Assuming that when our child comes home from school we first ask “how were your numbers” rather than ask about the Math test! Once again, stating that we are tightly controlling our child and THAT is the reason we have many low blood sugars. When you should know that the diagnosis for this disease is “Diabetes Mellitus, UNCONTROLLABLE.” It is what it says it is… “Uncontrollable.” Stating, INCORRECTLY, that testing interferes with the ability for a child to feel their lows. Never heard that one before; will have to run it by our endo. Hypoglycemic unawareness will become more common the length of time your child has had diabetes. It is a secondary symptom of the disease. Many people who have had Type 1 for five years or more will become hypoglycemic unaware…. it is not as simple as “resetting the glucostat.” For us, our child can and does feel her lows, but only when standing. Never when seated or asleep. Her only symptoms are shakey legs or being hungry. How many children wake from a very deep sleep and pronounce… “I feel low.” I would venture to say not many. For those of us who use or have used cgms, it is an eye-opener. Even on nights you think went well, you can see scarey dips in blood sugar. And when not using cgms, you can see a scarey dip in an hour on recently tested night-time basals taken just the night before. Just as I would NEVER insist a Mom MUST get up and check her child’s blood sugar X times a day and X times at night and state they are unfit parents if they do not do so, I would never imply the reverse. You’re right, this is not a numbers game, so stop counting! Stop counting the amount of strips we feel we need to use to keep our child safe! Be it 8 to 10 strips a day, as we used when our child was 8 years old at dx (BEFORE puberty); or up to 15 strips a day, due to exercise, puberty or teen growth hormonal issues. YDMV means JUST THAT. Each individual mother or father, who looks at their child’s blood sugar patterns over time, who logs the numbers, analyzes them, witnesses the day-to-day and night-to-night issues, is an expert in their own child’s diabetes. Not your child’s diabetes; their child’s diabetes. Parents should use the good common sense God gave them and determine for themselves if they are going to stay up and check BS or go to sleep for the evening, not listen to the advice of another parent… on the Internet, no less. For those of you who don’t have issues at night, forget the tendency to think others are just doing it wrong, “running their child too tight,” overprotective and just thank God things are good in your house and you can get a good night’s rest. Remember, too, that this can change on a dime. Daily observation and careful analysis should be your guide. I can’t stress enough: Every person has a unique, individual metabolism. This disease is metabolic in nature. Even if you have two children with D in your house, each will react differently. Why, then are parents advising, judging and questioning other parents? P.S. IMO, making such an issue over blood sugar checks is ridiculous. They take all of one minute. She only really felt them in the beginning. As I mentioned before, it does not hurt her and she does it routinely, not batting an eye. Ten to fifteen minutes a day is no big deal. She’s tough and D has made her even tougher. Parents, Man up; my girl has long ago.
I don’t let my child leave the house with a dirty face, or hands. I make sure his clothing is clean and his hair combed. I make sure his homework is done, and his teeth are brushed. I make sure he is respectful to his grandparents, his teachers, his elders. I don’t let him watch TV or Movies that I don’t approve of and I don’t let him play violent video games. I don’t tolerate back talk, sass unmade beds or late library books.
If I care this much about such daily minutia, things that keep life going smoothly, then you best your butt I’m checking bg at night and paying close attention to something as important as Diabetes care. Anyone that wants to say I hover can go right ahead and I will happily take that as a compliment. To do anything less than that would be a failure on my part as a parent.
[...] talking about Luke’s day first and his blood sugars second – I try, but my parental inclination is to focus on keeping the D monster at bay, often to the neglect of Luke himself (who right now [...]
I had to step away for a few days.
I’m really sorry if I sounded so volatile. I was angry.
I don’t blog. I have a facebook account, but hardly ever use. Twitter overwhelms me.
I do read blogs. I started reading them about 5 or 6 months ago. I’ve found many bloggers with whom I identify, and I enjoy reading their stories. (Mostly mother blogs. I’m a mother. I identify with mothers, and I have some favorites that I check/read everyday.) I never comment, because I have to create an account, and I’d rather just read. Besides I don’t want a bunch of junk mail, and I don’t know if that would come with creating an account.
Anyway, I read this blog several times a week. Mainly because I appreciate the technology updates.
I just feel like this poster came out of nowhere. I’ve never seen her leaving nice supportive comments on the other blogs I love. The first I heard of her was when I saw the Type 3 post on Six Until Me, then that letter to the senator, and now this.
My opinion is that she is looking for accolades at the expense of others. This time, I felt personally attacked as a parent (of a teenager, might I add). Those other posts left me unsettled, but didn’t strike the personal chord that this one did.
At any rate, I’m sorry if I sounded mean. Remember, though, that my previous comment was in direct response to the very things she wrote.
I just called it as I saw it.
And now I’m done with it. Good-bye. Going back to my google reader, where I’m happiest.
My comments were quite stern but I felt the advice given was downright dangerous. Moira is a tireless, well-known advocate for children with diabetes and is, no doubt, repeating advice that was given to her over the years… by endos, diabetes experts, mental health specialists, etc. And her own personal experience of raising a Type 1 teen. I am well aware the constraints of diabetes care can and does cause teens to rebel. And that we must watch out for and deal with these issues if they should arise. IF and WHEN our teen rebels, we will deal with it.And, yes, she may very well decide to ease up on blood sugar testing when out with friends and I will not nag her too much about it. Perhaps two or three years of suboptimal diabetes care won’t make much difference in the long run. But I am certainly not going to start with suboptimal care. Then, again, it is very likely she will wear her Dexcom all the time once it communicates with a pump and she will not need to do many blood sugar tests. We do a LOT less testing with the Dexom on. Moira is telling her personal experience to warn other parents. And that is great. It was the tone of the post, and other posts I have read by her that I object to. Yes, there will be diabetes burnout. I count on that. But what of other chronic diseases: Cystic fibrosis, for example? Do other parents admonish to cut back on the daily breathing treatments because they are onerous and painful so the child can experience a more “normal” carefree childhood? Of course not. Of course not. Make no mistake: Blood sugar control is a virtual lifeline for your child. The effects of poor control will not manifest itself for years. But they may manifest. For those diagnosed in childhood, this means they may manifest in early adulthood. We are determined to give our child the best chance possible. She has not minded so far and I believe she will thank us for this one day. Alternatively, if she should develop complications at an early age because we did not do all we could to help her, she will question our judgment as parents and, rightfully so.
Obviously this post has set off a myriad of emotional responses from many commenters so it’s definitely a topical issue that Moira has posted. As a Type 1 since 1986 and a parent to a 7 year old son with Type (dx at age 3), I can tell you from personal experience that with Type 1 diabetes, if you do the work, you get the results. The work is hard and time consuming. And a huge part of that work involves bg monitoring, healthy living, and not getting stressed out about occasional highs or lows because that is life with T1, period. After 25 years living with T1, I have no complications and maintain A1c’s in the 6′s as does my son. I credit luck and work for that. Another reader posted that T1 is a metabolic disorder and affects everyone differently … kids and adults. Parents are correct to do what they need to do to ensure their child is safe and develops good glycemic awareness … high and low so they can self-monitor and self-control their own diabetes when ready. Most endos will tell you that too-tight control is not good for kids because it can distract from this hypo-awareness that is essential to self-management. Yes, T1 management in kids can be a lot of work for the parent, especially when it involves getting up multiple times at night …. it’s a HUGE learning curve that is ongoing … you have to really understand the peaks and ranges of insulins, carb reaction times and cause and effect implications of corrections … pump or MDI, so you need to work with your endo’s closely to get the information you need to maintain good blood glucose controls and a healthy life balance which is all part of living well with diabetes. I’m curious to know, and perhaps this is another post topic Diabetes Mine can consider, is the overall time commitments required by parents to manage their child’s diabetes and the effects on work/job, relationships, finances, family, health & stress etc.
I’m not sure if anyone will even read this comment, as I am posting months after this thread was started! But as a 32 year old Type I who was diagnosed at the age of 14 (right in the middle of volleyball playoffs!), I have to say a few things. First of all, I commend all of the parents out there–including my own. I know the worry, pain, and sleepless nights you must go through! That being said, I have to share my own experience. I am pretty sure that if my mother–who is an RN–had woken me numerous times during the night to check my blood sugar as a teenager, I would have either rebelled even more or completely ignored my diabetes. EVERY parent needs to do what is best for THEIR child. And once your kid is no longer a toddler, does their own checks, shots, infusion changes, whatever, TALK with your child about how you can work together to manage this disease. Numbers are not going to be perfect…and for a lot of kids (like me; I’m a perfectionist), being asked what my numbers were made me feel ashamed, guilty, and angry…especially because I didn’t usually have an answer as to why I was 200 one day after practice and 40 the next! This made me not test very often at all…it was easier to not know the number than to know it and feel like crap about it! EVERY KID IS DIFFERENT!!! Even as an adult, I know my parents worry about me. I am not lucky enough to have a husband or a family of my own, and I am pretty sure that my parents freak out every single night, waiting for my 5:30 AM call to tell them that I am fine, etc. I have woken up numerous times at 6:30 with my mother trying to force gel down my throat or a glucagon into my leg (my house is about 45 minutes from my parents). I know parents have a lot of heartache over this. But please remember–what is best for one family is not always best for another. Respect each other!