At the heart of the matter: What matters to the person with diabetes isn’t always what matters to us.

August 30, 2011By 24 Comments

A quick note of apology for the lapse in blogging here. Blame it on Irene: We had no power for days and days. But I’m back. Waiting for the roofer to fix the torn-up roof but back nevertheless.

 It never really dawned on me how at odds our diabetes desires are with those of our loved ones with diabetes. Yes, we share the relentless drive for a cure and we look daily for better treatments. True, we all think diabetes blows. But I’m beginning to think that the deep-down wishes and worries of those who care about someone with diabetes are quite different than those who have it themselves. And I’m beginning to think this may be what is at the very root of the conflicts teens with diabetes have with their family and friends.

It came to me as I was reading the marvelous book “Don’t Kill the Birthday Girl.” “Don’t Kill” is the memoir of Sandra Beasley, a young woman who has suffered food allergies the likes most of us have never even imagined. And while food allergies and diabetes are two very different beasts, there was much in her story that resonated with me. Like how it seemed to her that every single school day of her childhood was someone’s birthday, and every single birthday meant watching the cupcakes get handed out while the teacher reaches for your “special treat.” (In her case it was 12 hazelnuts, which she’d line up in the little groove at the top of her desk; in my daughter’s case [don’t forget, we were in this diabetes world before rapid acting insulin came along] it was a pencil or sticker or some other “goodie” that was supposed to make it all right. Or like how every road trip had to be planned out meticulously, with the right foods and medications along and a proper distance from a medical facility. Yeah, we’ve played that game.

But it was this line in her book that made me sit up straight (which was not a good thing since I was balancing a flashlight on my chest and reading my way through Hurricane Irene):

“The good news is that teenagers with allergies, unlike most, know they’re vulnerable. The bad news is, many don’t care – at least, not enough to sit at the peanut-free lunch table or teach their friends how to use an Epi-pen or wear jeans with pockets roomy enough for an inhaler. In an earlier study, the same team of doctors found that teenagers said that the hardest part of living with food allergies was ‘social isolation.’  Their parents sited the most difficult issue as ‘fear of death.’”

 In other words there was her mother, stressing every moment about the reaction that might kill her daughter. And there she was, stressing at every moment about how the tools and actions needed to calm her mother’s fear would kill her social life.

Ummmm . . . bingo.

We parents – and friends – and lovers—and neighbors—and teachers—expend the majority of our diabetes energy on keeping our loved one safe and alive. Heck, I started thinking about Lauren’s kidneys and eyes when she was only six years old. You know what I’m talking about: every time a meter registers high or a shot is forgotten or a pump site crimps, deep down in our hearts we caretakers are thinking on thing: Please don’t let diabetes kill him/her.” It’s what drives parents to wake up every two hours, sometimes many nights in a row. It’s what sends us over the end on report card – errrr I mean a1c day. It’s what keeps us trolling the internet for better ways to treat, newer ideas for care and, goodness help us, hints that a cure is on the way.

But could that constant state of alert be what eventually drives our teens and young adults away from us when it comes to diabetes care? When kids are little, they want nothing more than to please. My older, non D daughter, was lucky enough to get her headgear for braces when she was way younger than most. Let me tell you something, that orthodontist had never seen a “time worn” chart as richly colored in as hers. The idea of pleasing and succeeding trumped “looking goofy” in headgear. Caring for your diabetes isn’t much different. Little kids want to please us. They’ll (somewhat) happily check a billion times a day. They’ll wear their pumps outside on their waistband. They’ll admit to feeling low and treat anywhere, any time. They are our diabetes puppets. And we like that. After all, we want to do all we can to ward off the worse.

But as they grow into their own beings, things change. In time, they come to be just like Beasley so bravely admits: more concerned with their social life than with their physical life. And since they are not with us every minute, have minds completely of their own and often are just plain bigger than us, there’s not much a diabetes loved one can do.

Or is there?

I remember the week my daughter was diagnosed. It was Halloween, and the hospital had all the kids dress up and “trick or treat” at the nurse’s stations. Each station made sure to have something for the “diabetes girls” (there were two of them that week). The kids came back, most with a bag of candy, but the two “diabetes girls” with literally a wagon full of toys. I mean big toys. One little boy was crying, ‘I want to have diabetes! They get everything!” But even with the big toys, the two little girls felt different. Then, the hospital had an activity. As God is my witness, my newly diagnosed daughter was invited down to decorate cookies. Giant cookies. With goopy goops of frosting.

I kid you not when I say my heart seized. I peered in that room full of sweetness and saw one thing: death. In a panic, I dialed up our CDE, gasping. “What should I do?”

Calmly, she told me to take three breaths and then said. “Let her decorate the cookie. Let her lick her fingers. Let her eat it. Or not eat it. Moira: let her be a kid. We can fix the blood sugar later.”

And so, barely hours into this D life, I did just that. And the CDE was right. She was a little high; they gave her a little more insulin. No one died. (although that was her first higher bg since dx. I’ll admit to visulalizing her kidney’s breaking down right then and there).

I wish I could tell you I took that teaching moment and applied it instantly to life. But I did not. I spent years aiming at blood sugar perfection. I set rules to keep my daughter safe. She never had to say no to a sleepover, she just had to offer to move it to our house (to this day, there are a group of girls who have slept in my house so many times I think they could move in without me noticing much of a change). I nagged a lot. I pushed and pushed for my daughter to be a perfect diabetic.

And as a teen, she rebelled. I now realize all my begging and cajoling and explaining about long term complications and short term dangers may have been for naught. God bless her, my teen just wanted to fit in. Just like Sandra Beasley.

My daughter in the early teen years. Wanting to fit in and not be different while wearing a bikini led her to abandoning her CGM. (The one I was sure was going to save her life).

So looking back, what would I do different? That’s hard to say. Maybe look more at the big picture than the little (meaning, if her averages are relatively okay all is well; and if one time the a1c goes up a bit I needn’t act like the world has ended). Perhaps I could have found a way to acknowledge that this all impacted her socially. I honestly never remember having that kind of conversation with her; so busy was I worrying about keeping her alive and alive for a long time.

My daughter’s doing well now (more on her 20th birthday when it comes in a few days!!!), but I fear I may have failed her in some of those years. I worked so hard at being the protective mom; making sure she ate right and checked her blood and treated highs and carried stuff for lows and understood the need to bolus and count every carb she ate. What if I’d just been a little more empathetic? What if I tried to understand how she really felt instead of trying to push on her how I felt? And as I read on, I wondered if Sandra’s mom was thinking the same thing.

Then I came to this line, late in the book. Sandra has just attended an allergies conference and begun to make a difference, along with another woman named Jen, in how kids with allergies are treated.

I have to honor that there’s an intimacy there, too, one unique to any parent who manages a child’s chronic illness. My mother, the diplomat. My mother the (un)registered nurse. My mother, the translator of cries.

 If my child did have allergies, I’d know where I’d look for guidance. My mother, the teacher. If kids like Jennifer and I have blazed a trail, it’s only because parents like her cleared the path.

 So maybe I could have done better. Maybe the mom of a younger kid will read this and correct my mistakes with their own child. But in the end, I think our kids know that when it comes down to it, we just plain love them. Even when we are ruining their social lives, they know we are doing it with all the love in the world.

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Comments (24)

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  1. Sherry says:

    Loved reading this. My daughter with diabetes is 5 years old. I will remember what I have learned from your wisdom here, Moira. Thank you.

  2. This is SUCH an interesting topic, because after watching and talking with the many D-moms I’ve connected with on Facebook, it often seems harder to be the parents of a kid with diabetes than to actual live with this disease myself. Yes, it is hard and frustrating and challenging every day, but I am happy and happy to be alive, even with diabetes. As a parent, it seems that their emotions around diabetes are often overwhelmed with so much pure heartache for their child, because they see and know what their own child has to endure every day. It’s a different kind of challenge.

    Great blog, Moira.

  3. What’s especially hard as a parent is that we are activily working to keep our kids alive. Most parents make decisions and don’t have the multiple layers of decision trees and what ifs. It’s exhausting. Especially when you’re scared to death to say “yes” to something, but do anyways because, like you said, “Kid first.” My girl is 5th grade now and at that stage she is craving more independence… when she asks anything I have to ask myself “if she didn’t have diabetes, would I let her,” if the answer is yes then I force myself to make it work, even though I’m terrified inside and want to scream no.

    Great post and great reminders.

  4. Katie says:

    Wonderful blog, Moira… and I so know that silent prayer… I always always tried to put LIFE first. But the worry is so hard.

  5. Ann says:

    Great topic and an early Happy Birthday wish for Lauren to have a great year!

    So far, so good, knock on wood, I just wrote that about my non-D daughter with another chronic disease whom we dropped off in Chicago for her sophomore year of college.

    Lipoatrophy in a Patient on Insulin Pump….the only place Phil hasn’t hooked up his pump is in his arms. He is starting to get worried that pumping is causing atrophy from the 7 yrs on a pump. How long was Lauren’s pump break? Do you know anyone the pumps via their arms? I don’t know how the tubing line would feel running down his body.

    • moiramcc says:

      ann Lauren pumped via her arm for a few years and liked it quite a bit. Is he using Novolog? We found Humalog cuased atrophy but Novo did not — and the good news is: the atrophy went away by giving the site a break (for a year or so). Her pump break started in Jan. She thinks she might continue it for a while. She admits you get tighter control on the pump but honestly, lantus and novo is really not so bad at all . . . . if he is considering it, let him do it. You know I love the pump . . . but lauren is happy and when it comes down to it, so long as they are putting insulin in, it really does not matter how. IMHO. It was TOTALLY her thing though . . . which is how it needs to be now. sigh. giant sigh

  6. Lora says:

    Great post! I think we can ALL relate to the inner battle we face. Our CDE told us on day one “he is a kid first”. I still have THOSE thoughts, you know the ones, but I think I have done my best at listening to the words from that first day. I DO let him be a kid first… even if it KILLS me in the process. I could improve, I know, but I do try to follow that advice because deep down I am terrified of the teen years. I pray everyday that BOTH of us will make it through those :)

  7. This is a wonderful post. My husband and 4-year-old daughter have T1 diabetes and he insists that we don’t let diabetes rule our lives. It’s hard for me sometimes (I’m a routine junkie and a bit of a control freak at the best of times) but we try all the time to follow exactly the approach of letting Isabel be a kid first. Yes, she has to fit testing and bolusing into her day, but we try and make it as unobtrusive as possible. We never say we hate diabetes or express disappointment or fear at a high number or a low, or complain about about lack of sleep in front of her, etc.. We empower her as much as possible but not if she doesn’t want to be empowered. We don’t always get it right but hopefully if we focus on the emotional side of managing her diabetes now, while she is still only little, it will pay dividends later on. Fingers crossed :)

  8. Nancy says:

    Oh Moira….you really are spot on with this. I remember the days when Teresa would proudly wear her pump in a cute, little, patterned fanny pack that she was proud to show off….and what seemed like moments later (which was actually her preteen years) when every piece of clothing we bought had to be inspected for an appropriate place to completely hide the pump and tubing. It really hit home for me when I was balancing fundraising for diabetes and celiac and it was a struggle to do both. I asked Teresa which disease she would rather get rid of (thinking to myself that the answer would OBVIOUSLY be the life threatening one – diabetes) and she replied without hesitation “Celiac Disease” explaining that every day there were many, many social/food related interactions with people where she was forced to feel different, while at least sometimes with diabetes, she could discreetly go into the bathroom or someplace to privately deal with blood sugars and insulin. Feel of social isolation for her, whether diabetes or celiac, was greater than fear of death (the fear I have felt every day of my life since January 14th of 1998).

  9. Misty says:

    This is a really good post Moira. I’ll be honest, it has my head spinning a little. Especially with all that I have been putting into “back to school” preparedness. My number one concern – ALWAYS – is that my daughter is safe…and healthy. Sure, we’ve talked about how to educate other kids so they don’t “ask questions about her pump or cgm” all the time. But, thank you for opening my eyes to a whole new side of things. I know that I can’t abandon one for the other, but as you pointed out, in my daughter’s eyes the social aspect ranks right up there with overall health concern. And now my head is spinning because I think we need to work on some balance of that – before we hit the teen years.

  10. Jessica says:

    OMG, that is me the mom, you are talking about, my son was only 3 at diagnosis, he is now 7. Thank you, for making me realize there is a bigger picture ahead.

  11. shannon says:

    Very powerful post, thank you for sharing. My daughter is in the 6th grade and was diagnosed 2 years ago. We are heading into the treacherous teen waters and the perspective presented here will help me as we make our way there.

  12. Donna Washburn says:

    Thanks for posting this Moira. My daughter Sammy was diagnosed on Halloween as well (2001) and went trick-or-treating at Children’s Hospital. They allowed the kids to have candy and sent them home with a list of carbs for each candy they had! She was 9 and the first time “out” when I had to test her blood sugar, I called her out of a play practice and she was mortified! She actually quit the play after that and I was heart-broken. After that, I prepared better and she did fine. The best advice I received was from a nurse at Joslin, she said to do as much as I could for Sammy as a child, because if she had all the responsibility, by the the time she is a teenager, she will rebel and be “sick of it.” Sammy is now 19 and in college and taking very good care of herself. She wears an OmniPod tubeless pump and likes it (as much as anyone can like using a pump). As far as I know, she never had to get up in the middle of the night last semester! This summer I still reminded her to check her blood sugar, but when she is on her own, she KNOWS she has to do this (I hope!) :)

  13. Amen to all of that! I was diagnosed when we had to boil the glass syringes and sharpen the needle every few days. Blood sugar levels? Talk about hit or miss! 44 years later I still run high more often than not. I have two healthy young children and, for some unknown reason to my physicians, no complications. Life is easier now with the technology, by no means medically perfect sugars, but it is easier.

  14. Karen says:

    Great post and I’m so sorry that Irene caused so much damage for you.

    I can so relate in terms of my daughter who is celiac. She was diagnosed as a teenager and does well but sometimes gets mad at my hovering. She is off at college now and probably enjoying the freedom to manage it herself.

    I can also relate to it as a Type 1 diabetic myself. I got it as an adult, but sometimes even I just want to fit in. lol

  15. I am not looking forward to them as teens. I can’t even imagine one of my boys going on a date with a girl for the first time and, being the gentlemen they are, letting her pick the restaurant. They have so many food allergies, they have to be careful where they eat. But you know how some boys can be – they will please a girl no matter what it takes. I hope I can teach them better than that so they understand that any girl who isn’t willing to accommodate their allergies or doesn’t understand the limitations their food allergies will place on their social life and relationship, isn’t a girl worth pursuing.

    Mostly, though, I’m worried about bullies. I’ve read about horror stories about kids throwing peanuts and peanut allergic kids to torment them. It’s horrifying.

    • Moira says:

      I found it incredible how Sandra shared the same view my daughter did: she cared more about her social standing than her health — and her mom shared mine: we cared more about their health than anything else. Ah-may-zing. Happy to say we are over the teen years now!!

    • Moira says:

      ps i hope those bully stories are just urban legend. That’s SICK.

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