The Battle Cry of the D-Mom: It ain’t easy out here

 

I’m really hoping to get some comments going on this one. We moms could use the insight of you kids with diabetes, and the insight of other moms. Go for it!

Being a mom is hard work. As Joan in “Mr. Mom” so deftly put it: “It might even be the toughest job in the entire world.  It bends your back, it drives you nuts, and it makes your boobs droop.” And that’s even without diabetes in the mix.

Being the mom of a child with diabetes brings it all to a whole new level. We Moms (and I don’t mean to leave out Dads – Dads have their own unique issues with parenting a child with diabetes and I promise to delve into that here in the near future) have to be full time parents all while being full time nurses and endocrinologists. We have to take all the mean, strict rules (that is how our kids see them after all) and swath them with a thick layer of . . . even more rules.

It makes for a challenging parent-child relationship, I’ll tell you that. Even though “Steel Magnolias” is out of date and really kind of scary, there is one part of the film that still holds true today (and no, I’m not talking about Drum needing to rush to the restroom when his “coffee kicks in.”) It’s the complicated, difficult, angst filled but oh-so-very-loving relationship between Shelby and her mom. We may have better tools and more understanding of diabetes today than back when that film was made, but we’re still in the same situation when it comes to mothering a child with this disease.

Not that I’m an expert or anything (although I did – much to my two daughter’s amusement back then – publish a book on raising girls. “They’re gonna read a book on that by you?” One of my daughter’s asked, snickering.), but I do feel like with 25 years of being a mom under my belt and 14 years of being a mom of a child with diabetes there as well, I’ve seen a lot. And I’ll be honest with you: while my number one goal has always been to keep my daughter with diabetes safe, alive and healthy enough to remain that way for a good long time, over the more recent years, I’ve realized my goals had to include something else: helping her live a well-rounded life, and helping her, yes, do that without me running the show.

My two awesome girls as teens -- when they might not have thought I totally rocked. ha ha

Alas, That’s not an easy thing to do. I was lucky enough to have my second daughter be the one with diabetes (no – that sounded wrong. I was lucky enough to have experience in raising a daughter before diabetes came along. That’s what I mean). I knew that mood swings and disagreements and bucking the rules and just plain despising your mom sometimes is just part of the adolescent experience. So at least, when I started to see some struggles with my daughter with diabetes, I knew some of this was par for the course. But with diabetes along, its harder to just let things run that course. Because it’s one thing for your daughter to blow off curfew or to pitch a fit because you are “the only mother in Plymouth” not to allow a co-ed sleepover for 14 year olds. It’s quite another for your child to blow off blood sugar checks and insulin doses, and to pitch a fit because you are “the only mother in the world” who sticks her nose into her daughter’s diabetes this much.

So what’s a mom to do? I saw some different cases as “Diabetes Rehab” that really made me think. One mom there was clearly so angry at her daughter’s lack of compliance that she took it completely personally. I totally get that. It’s hard not to rail at non-compliance when you’ve been the security guard to your child’s organs for oh-so-long. But the anger wasn’t doing them any good. In fact, it was ruining them.

Another mother was clearly still completely in control of her daughter’s diabetes even though the girl was about 20. She’d not been allowed to live at college (so her mom could still check her three times a night). When it was time for the young woman to speak, the mother spoke for her (as we all do when they are younger . . . but this was jarring). I totally get that too – it’s crazy hard to let go when you know your child probably isn’t going to do all the things you want them to (or almost any of them in some cases). My heart broke when that mom asked the husband of a patient there, “Do you check her a few times a night? I am waiting for my child to meet the man who will take over for me.” (For the record, the man said no . . . other than emergencies and during pregnancies, they don’t check all night. But he was a peach of a guy).

One young woman told my daughter and me she was there without her mom for a reason: the years and years of her mom trying to manage her diabetes when really, it was time to let go, had hurt their excellent relationship. “She’s kind of upset I’m here without here,” the young woman said, “But this is the way it has to be.”

 

And here’s the thing: Every single one of those moms are caring, loving compassionate people just trying their best.

And then there was me. Make no mistake, I have made my share of mistakes as a mom and a diabetes mom. And this day, my goal was to shut the heck up (anyone who knows me knows how hard that is for me!) I vowed myself to be silent; to let this be my daughter’s experience and not an experience filtered through my eyes and thoughts. It wasn’t easy, but I think I did okay. At one point my daughter whispered, “Mom. It’s okay for you to talk. Really.” Still, I tried to stay quiet. Okay, well more quiet than I usually  am.

I think of all of this when I talk to the parents of young kids with diabetes. They are just like I was then: they think that they’ve found a pattern and a system and their child will grow up embracing that pattern and system. (I wince when I recall me saying in a snotty voice to some poor struggling parent of a teen “Well we’ve been able to keep her a1c down! You just have to lay out the rules.” Yeah, my kid was like 9 at the time. What the heck did I know?

And that’s why it’s so hard to be a D-Mom. Unlike other parenting situations, you have to find a way to stay true to what needs to be done but move, as they grow, to a place where you hand it over to them, for better or for worse. Trust me, I ain’t easy. My daughter is in her second year of college now. Things are okay. When I say okay I mean she’s getting good grades, making tons of friends and semi taking care. Is she in tight control? No. But I’ve learned to listen to her and try to back off from wanting (needing) to run her life and be her complete protector. “Baby steps, Mom. Babysteps,” my daughter said to me the other day when I suggested she keep a more detailed log book (read: any log book at all).

I sighed, took a breath and tried to keep quiet and let her live her life on her terms. She’s 20 years old and I’ve done all I can. Like Shelby and her mom, she knows where I am and knows that I love her.

And as for me getting through this transition, another “Mr. Mom” quote comes to mind: “Beer?” “Beer? It’s seven o’clock in the morning.” “Oh, right. Scotch?”

Just kidding.

 Do share your experiences with your mom or as a mom in this diabetes world. Let’s learn from one another.

13 thoughts on “The Battle Cry of the D-Mom: It ain’t easy out here

  1. Wow, Moira. Your post is so insightful! Thanks for sharing it. I think that I’ve had many of the same issues with my two pre-teen girls, especially those control issues, but you have to deal with the isues of diabetes in addition. It makes me take pause and your advice on parenting is so helpful. Thanks!

  2. I have type 1 and so does my sister. I’m 28 and she is now a junior in college. I don’t know how my parents have done it. It’s been a bumpy road. However, when I bottomed out physically and emotionally, the result was a grown up choice to manage my diabetes the way my parents had been desperately trying to get me to all those years. The interesting thing is that even though I may not have done what my parents asked while a child and teenager, I listened and their words carried through to today and have helped me so much, even though it’s been many years after the fact. So I hope all parents out there know that what you say and how much you care matters to your kid-maybe not today but surely tomorrow. 🙂

  3. This is a great post, thanks Moira! My daughter is still only 4 and so I manage her diabetes almost 100%. I already spend a lot of time thinking about how I must, and will, let go gradually as she gets older. I think it helps that my husband also has T1 and is very laid-back about it, so we definitely don’t micro-manage her condition. But still, it will be hard to relinquish control, I know!

  4. Great topic Moira! I have two kids in college with Type 1. They both manage thier own diabetes and they’re not perfect but they’re enjoying college and doing just fine. I have learned that the best way to help them manage a well rounded life with diabetes isn’t what works best for me but what works best for them – and that changes as thier life progresses. My son dutifully texts me his blood sugar number when he goes to bed and when he wakes up (but not during the rest of the day). It works for him to remember to test because he’s reporting it to me. The texts have no other info about what’s going on in his life – just a number, and no matter how much I’m sometimes dying to, I don’t ever comment on the individual numbers because I don’t know the context of the number; but if I see a pattern of continuous highs or lows over several days then I find a time to call him to discuss how things are going and we brainstorm what changes he might make. On the other hand, under no circumstances would my daughter agree to routinely text me her blood sugar numbers and she’s doing just “fine” handling her diabetes on her own. She does find a reason to text me every day with some newsy bit of info about her life just so I know she’s alive and doing well – but she rarely talks about her diabetes. I do help her organize supplies and argue with insurance companies but leave day to day mangement up to her. It’s still sometimes hard to relinquish control, but that is true for many parts of thier lives.

  5. Good post, Moira. As you know, this can’t be said often enough. We are not the boss of our adult children’s diabetes practices. (Or anything else, really – it’s not just D management we have to let go of)
    It takes many years before they approach doing it how we THINK we would do it. My son is 28, and I’m still waiting for the signs that he does anything remotely like what the diabetes online folks claim they do. 😉 But he is healthy, happy, and in decent control with no complications YET.
    But college – the most frightening time of my life.

  6. This is a tough subject…knowing just when to let go. I think it is a gradual process. Baby steps. My daughter is 12 years old (dx at age 7). I have been D since I was 15, Now 40. The one thing I want to add to this thread of comments is, to always let your child know that you will take over the management if they ever need a break. As I inch my daughter towards independence, I always remind her about this. I think it gives has a sense of calmness, that it is okay for her try out a new responsibility b/c if she ever gets overwhelmed with it, she knows I will always be there. Also, as I make decisions for her, I always try to speak out loud as I make them so she learns the reasons why we are doing what we are doing. Then when she is in a similar situations she may have a previous experience to fall back on and reflect.

  7. Every post I read by you leaves me saying, wow, that was the best one yet. And then another one posts… you take the very thoughts and emotions straight from my mind, my heart, and put them to paper… and way better than I ever could. I am so glad to know you, to have you as a mentor, a role model, a comrade, a fellow D mom. Thanks for this excellent blog. My daughter is almost 15… diagnosed at 7.5yrs of age. I am where you describe in this blog.

  8. Great post Moira. I’m one of those moms who is right in the middle of trying to shift responsibility. My daughter was diagnosed only 18 months ago, so for awhile I pretty much managed it. When she got the pump a year ago she began managing by herself during the day. I try to let her do as much as she’s capable of, while still “taking over” in the evenings because by that time she wants someone else to take over for awhile. She’s very responsible, so far, but I know she’s going to get burned out eventually and we’ll have to deal with that when the time comes. It’s hard! As a mom I want her to be happy. I want her to live a long, healthy life. She’s the youngest, with siblings 9 & 11 years older, and for some reason one of my greatest fears is that her siblings will outlive her. I want them all to have equal chances of hitting that century mark, or blowing right past it! But as an old codger with diabetes once reminded me, it’s her disease, not mine. I am here for her when she needs me, but try (as much as I am capable) to back off when she doesn’t. Is it any wonder I’m going gray? Good luck with your surgery. I will certainly miss you!

  9. great post, and something that is on my mind a lot. my daughter is nearly 12 and has quite a bit of responsibility already. she sometimes makes different decisions than i would were i 100% in charge of her diabetes (like when she was first diagnosed), but i figure it’s the only way for her to learn what works best for her, so i do my best to give her as much independence as i fee comfortable with.

    the notion of college is so daunting to me, and i draw encouragement from stories mentioned in comments above (i would LOVE a text every morning and evening, i think!).

    thanks for bringing this topic up for discussion!

  10. My daughter is 7, so she does age appropriate care like checking her own blood sugar. But I do the rest.

    I have learned so much from other d-mom (and dads) online. And I also learn so much about myself by sharing my experiences on D-Mom Blog.

  11. I think the younger your child is when they are diagnosed, the harder it is to give up control. My daughter was diagnosed at 2. You go from controlling it 100%, checking sometimes 15 times a day, because they cannot communicate with you. You do everything for them, for their diabetes and slowly they want to take part. They eventually want a little control for themselves. I remember at 4 Meredith could check her own blood sugar and proudly tell me the number and if it was high or low. The first time she told me she was wiggly (her word for low), she was 3 1/2 and I cried all day because I was so happy! The first time I left her at a birthday party (without a relative or anyone there who was a nurse), I only called twice and they forgot to make her punch her carbs into her pump for the cake, but I did not care. I was so proud of myself that I let her be normal like all of the other girls. I knew that I had to start letting her be a little independent (at age 6- haha). I love your analogy of the baby steps. Meredith is now 8 and I try harder and harder each year to separate myself a little more. Hopefully by the time she is in college, a cure will be here. If not, I am working on myself. One baby step at a time.

  12. Once again… you amaze me at how well you can verbalize how scary this whole D thing is. As the once rebellious daughter Dx’ed at age 6 and now 40 and back home with Mom and all her rules and “nagging” I can tell you. We NEVER forget… all the days and nights that you sat up with us when we were feeling crappy and all the times when we thought “we were in charge of our own lives” and hated how much you reminded us how to do it better… those are the times that when we are older, and alone and “on our own” that we know exactly how hard this was not only for us, but for you too… if not harder because you had to live it with us and it wasn’t even your disease!! And even now at 40… Mom is still with me… fighting the good fight, telling me how to “do it better”, and still struggling with the ins and outs and the good times and the bad times. We NEVER forget!! So THANK YOU… just in case she forgets to tell you!

Leave a Reply

Your email address will not be published. Required fields are marked *