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Posts from the ‘Psychosocial Support’ Category

Diabetes Blog Week: Language and Diabetes.

Language and Diabetes:  There is an old saying that states “Sticks and stones may break my bones, but words will never hurt me”. I’m willing to bet we’ve all disagreed with this at some point, and especially when it comes to diabetes. Many advocate for the importance of using non-stigmatizing, inclusive and non-judgmental language when speaking about or to people with diabetes. For some, they don’t care, others care passionately. Where do you stand when it comes to “person with diabetes” versus “diabetic”, or “checking” blood sugar versus “testing”, or any of the tons of other examples? Let’s explore the power of words, but please remember to keep things respectful.

(And for more on the topics of Diabetes Blog Week 2016, click here.)

Language matters.  The words we use matter.

Some words make me all fired up, like “consumer.”  I am a consumer when it comes to cars, or coats, or snow blowers.  When it comes to diabetes, I’m not a consumer.  I would never choose to consume these goods; they are chosen out of the desire to stay alive.  I don’t like “suffering from diabetes” because it makes me feel weak and compromised, which stands in contrast to where I prefer to anchor my emotions about diabetes.  And I totally hate the concept of “good” and “bad” blood sugars.  That whole ideology can fuck off in favor of “in range” and “out of range.”

I appreciate the word “complications” because its connotation is perfect for how I feel about diabetes-related complications; that shit is complicated.  I like the word “empowered” because it reminds me that I have a say in how this whole life maps out, diabetes or not.  I like any words and phrases that tie the physical aspects of diabetes to the emotional ones.  I latch on actively to “hope” versus fear.  And I like being called “Kerri” instead of “diabetic,” but hey, that’s just me.

(And I really like certain curse words, but I am trying to use those less, but it’s difficult.  I don’t make insulin, I do make use of curse words.  It’s a terrible habit, but one I am not changing.)

But it’s not about the words we shouldn’t use, or the ones that seem potentially loaded.  This morning, after hearing about the death of a fellow advocate (outside of the diabetes space), I’m spinning with thoughts of the words I wish I used more, the things I wish I said.  The things I should say.

Like “thanks for sharing this.”  I think this every time I read a blog post, or a Tweet, or a Facebook update from someone and it makes me stop and think.  The DOC is filled with voices that challenge what I thought I knew, and who teach me how to re-examine my chronic illness with grace and determination or perspective or humility … or all of it.  I like the way they think.  I like what they say.

And “How are you feeling today?”  I interact with a lot of people touched by illness – patients, consumers, caregivers … whatever word words for you in this way – and their stories touch me.  A lot of the time, I absorb what they’re saying and store it away in my head, but I want to reach out more, ask “how are you feeling today?”  I want the people in our community, and outside of it, to know how much I appreciate what it takes to share their stories, even when they are worn out by doing it, by living it.  A little ask goes a long way.

Or “You aren’t alone; how can I help?”  Because sometimes people share to get things off their chest (“I hate low blood sugars!”), but other times they reach out in hopes of someone reaching back (“I feel so alone with diabetes.”)  Words matter, and hearing, “You aren’t alone; how can I help?” might make a difference.

And “I’m sorry.”  Because I am.

But mostly “thank you” and sometimes, “I love you.”  Over the last few years, there have been people who have come and gone from my life that left lasting impressions, and I bet I didn’t tell them “thank you” and “I love you” nearly as much as I should have.  I know I thought it – thought it a lot after they were gone – but I should have said it then.  When they were here.  When they could hear me and understand the influence they’ve had on my life, the positive mark they’ve left on my existence, and the ways they’ve rocked my world for the better.

Words matter.  Stories matter.  People matter.  So thank you.  And even though you’re reading these words on a glowing screen and we’re communicating mostly through a digital medium, you are part of a community that has forever changed me.

 

Diabetes Blog Week: Message Monday.

It’s Diabetes Blog Week, a week in the year where diabetes bloggers can rally together and share their stories, following suggested (but not mandated!) themes and focusing on connecting with one another as a community.  And who better to closely knit our community together than Karen (who is known in my household as “The Knitter“)?  Karen kindly brings us closer on Diabetes Blog Week by inspiring others to raise their voices.  So let’s do that.

Message Monday:  Lets kick off the week by talking about why we are here, in the diabetes blog space. What is the most important diabetes awareness message to you? Why is that message important for you, and what are you trying to accomplish by sharing it on your blog? (Thank you, Heather Gabel, for this topic suggestion.)

My blog started back in May of 2005, admittedly mostly because I was lonely with diabetes.  I had lots of friends and community outside of my busted pancreas, but no one in my life who “got it.”  That frustrated me.  Made me feel lonely.  Contributed to feelings of isolation.

So I Googled “diabetes” and a long list of shit that would go wrong with my body as I aged came back as a search return.  Not fun.  At the time, I was 25 years old.  I wasn’t ready to think about my chronic illness in terms of a ticking clock.  I wanted more reasons to live, and live well, instead of reasons why I should tuck my islets between my legs (ew) and get ready to die.

Eff that.  I want to have a proper life after diagnosis, not one that’s dominated by fear.  Gimme some hope.

Which brought me to the blogosphere over a decade ago, and that desire to connect with people who intimately understand diabetes is what drives me to stay here.

Over the course of the last eleven years, my “message” has changed.  I’ve changed, so that makes sense.  When I was in my mid-twenties, I wanted to find others who were interviewing for jobs, starting relationships, living on their own, and making their way as an adult … with diabetes.  Confirming that a community existed, and was accessible, lit me up proper.

As I got older, I was interested in hearing about successful parenting with diabetes.  Not exclusively about pregnancy, because that’s not a thing for everyone, but about how families expanded through whatever means they felt were right, either through biological children, or adopted, or fostered, or kids of the decidedly furrier variety.  I really took a lot of pride in sharing my pregnancy six years ago, and again now, because it wasn’t perfect, or seamless, or without issue but hell, it was mine.  And it what I worked for.  And it was worth it.

When there were complications, I felt comforted by the community who had been there before me, and by the hope they provided as to life after diagnosis.  Same goes for diabetes-related depression.  Same goes for infertility.

Same goes for any moment in the last eleven years where I’ve felt alone or potentially isolated, but the community taps me on the shoulder and goes, “Wait.  You aren’t alone.  Turn around; we’re all in this together.”

There’s a level of support found in our community that I can’t properly say thank you for.  But I’m thankful.

Why am I here?  To share my story, as ever-changing as it may be.  To make a difference.  The stuff I share from my digital soapbox grows as I grow, leaving my goal simply to connect with my peers and to live well.  What am I trying to accomplish?  I still don’t know, but I have seen that I accomplish more, live more when I feel the support of community.

I don’t have a set “message,” but I do have a life, and it’s worth documenting if only to prove to myself that diabetes will not bring me down.

If anything, with the help of our community, I’ll force it to raise me up.

Perspectives on Diabetes: Why Children with Diabetes Matters.

People ask me why this conference matters, why the organization matters, and it’s sometimes hard to sum up.  What’s so great about sitting in a room full of people with diabetes?  Isn’t it like surrounding yourself with a reminder of something that is a pain in the butt (diabetes)?  Doesn’t it suck to talk about diabetes all the time?

DUDE.  NO.  This is kind of the opposite.  Being around people who understand diabetes doesn’t breed a boatload of discussion about it.  Instead, I’m sitting at a lunch table with folks who know the ins and outs of diabetes, but we don’t shout out our blood sugar results or bolus amounts.  It’s not like that.  We’re talking about what our lives are like outside of diabetes, about the life we build that includes diabetes, not built around diabetes.

People with diabetes wear green bracelets, to both alert to potential emergency situations (you see a green bracelet in distress, think glucose tabs in a hurry) but the green also threads together the people who are playing host to diabetes.

A quick glance at someone’s wrist lets you know that they get it.

Sometimes, when days are kind of rough, I’ll put on a green bracelet to remind myself that I am not alone. Support from the community is as important as the insulin I take; both keep me healthy, and keep me going.

But it’s not just the green bracelets that make this community so powerful. Orange bracelets are given to folks who don’t have diabetes, but who remain touched by diabetes.  My daughter and my mother came to Friends for Life with me a few years ago, and they were also able to connect with their respective tribes, the orange braceleters. My mother, after decades of raising me without a vast diabetes support network, was immersed in a sea of parents who understood so much of what she’s experienced as my parent. And my daughter, her understanding of mom’s diabetes expanding with time, was able to hang out with other little kids who had parents with diabetes.

This kind of support, community … whatever you want to call it, it matters.  I mean, you’re here reading on a diabetes-centric blog, for crying out loud.  Clearly we, as a group, have a pull towards one another and benefit from connecting.  For me, knowing I’m not the only PWD (person with diabetes) on the planet makes diabetes easier to handle.  This is a hard thing to build studies around and quantify how it affects health outcomes, but taking my insulin is easier when my mental health receives care.  My A1C has been consistently steadier since engaging with the community.  My level of diabetes health literacy has grown by leaps and bounds.  And diabetes scares me less, on the whole, because I am surrounded by people who are in it with me.

Whole person health, remember?  Diabetes doesn’t exist in a damn vacuum.


The annual Friends for Life conference is coming up this July, and if you haven’t checked out the conference, now is the best time.  There are also other regional conferences (Anaheim in September, Falls Church this past April) that offer the same connection and community on a slightly smaller scale.

Full disclosure:  I’m a board member for T-1 Today, which is the parent non-profit organization for Children with Diabetes.  My bias includes that, and the fact that I haven’t produced any insulin for the last 30 years.  If you’re an organization interested in finding out more about how to make a tangible difference in the diabetes community, please connect with me.  And if you are interested in making a charitable donation to support the organization, click here.  And thank you!

SUM Related posts:

Looking Back: Diabetes Back in the Day.

This week is school vacation week for Birdzone, which means there’s plenty of Bird-watching and not a whole lot of inbox-management.  (Unless it’s after midnight … which is when all work-from-home happens … that’s normal, right?  So are these bags under my eyes, right?)  Which means that I might be re-visiting a few posts here and there.  Starting with today, and a look back at how diabetes has shown up in my diaries from years ago.

   *   *   *

Last night, I found a box of old diaries.  I’ve been keeping a paper journal since I was seven years old and I have so many hardcover journals with cats and flowers and balloons on them, my handwriting maturing as steadily and awkwardly as my content.

It’s strange, though, to see how little focus I put on diabetes in my previous journaling.  Most of my earlier journals (eight, ten years old at the time) talk about a boy I had a crush on in fourth grade or roller skating on the weekends or battling with my brother and sister.  But there were a few entries in particular that spoke to life with diabetes.  And while I’m not quite ready to recount the long, dramatic entry about my first kiss (gah!), I wanted to share snippets of my diabetes diary from my teenage years (these entries are from when I was 14 and 15):

May 13, 1993:  Beavis and Butthead is over.  It was strange, because they were in school and in home economics.  Their assignment was to carry around a back of sugar as a “baby.” But Butthead said he couldn’t do it because he was “diatetic.”  The teacher reprimanded him by saying, “That’s DIABETIC, and yes you can do this.”  I’m not exactly sure why, but that comment bothered me.  Alot.  I think it’s because I’m so sensitive about being a diabetic.  It makes me wonder how handicapped people feel about ‘HandyMan’ on In Living Color.  If I feel offended about an off-handed comment, how would someone else feel about a recurring segment?

Was this one of the first moments of diabetes in the mainstream media that I can remember?  I honestly can recall being affected by this, and wishing Butthead had said “diabetes” correctly.

June 27, 1994:  Today, my mother was talking with [name redacted] about diabetes camp and I couldn’t help but overhear.  She said, “As soon as Kerri left, we all relaxed and lead a normal two weeks free of worries and medical stuff.”  Am I a burden to my family?  Do they resent my diabetes?  Do I have a “normal” life?

This isn’t to call my mother out for saying this.  I’ve heard a lot of parents say the same thing about the weeks that their child is away at diabetes camp.  Diabetes requires parents to think on their feet all the time, so the reprieve of having their child away and under constant and capable medical care must have been such a nice break.

Funny – I’ve always wanted a break from it, too.

July 6, 1994:  I leave for Clara Barton Camp on Sunday.  I love camp.  We are all incredibly goofy and loved.  It is such a cool feeling to have people who understand it to talk to.  Sometimes I feel alienated at home because I am the only diabetic around.  No one seems to understand the emotions I feel concerning diabetes.  I am frustrated and angry sometimes, and other times I feel bad for myself.  Sometimes I even want sympathy, and that’s confusing because I say I don’t want to be treated differently at the same time.  It’s weird, though, because I want to be able to control every aspect of my health, so when my health emotions get all crazy, I feel like I’m going nuts.  At least at CBC I’m not the only one who feels that way.  If I tried explaining that to my friends, they’d look at me like I was nutso.

Ah, my longing for a diabetes community, even before I knew there would be one online.  🙂

And this paper was shoved into my diary from 1991, written on school paper and smelling softly of pencil boxes and recess.  It speaks volumes about how much a 12 year old kid grasps about guilt and diabetes:

A 12 yr old's diabetes to-do list.

It’s a lot to carry.  I felt so alone.  And as I read through these diaries late into last night, I was again grateful to know I’m not the only person out there living with this.  The power of this community is tremendous.  I also realized how everything has changed, but at the same time, nothing has changed.

Balancing Diabetes: Parenting with Diabetes.

Back in March of 2014, my first book was published by Spry Publishing and it features a number of different voices from the diabetes community.  Today, I’m sharing an excerpt from Balancing Diabetes titled “Parenting with Diabetes,” which dives into the journey of parenting while managing diabetes, with perspectives from friends in the diabetes community.  Thanks to Spry and the diabetes community as a whole for supporting this book!

  *   *   *

When my daughter was born, I remember staring at her for ages and realizing that all the planning and strategy that had gone into a pregnancy with diabetes was behind me, and now I had a baby. An infant, for whom my husband and I were solely responsible. If she cried, it was our job to console her. If she was hungry, it was our job to feed her. And if she smiled, it was our job to feel arrogant and proud, as if we had anything to do with the smile of a two month old, when in fact it was most likely gas.

But whatever. We went with it.

Taking diabetes completely out of the equation, the move from “couple” to “couple with a baby” was a tremendous change.   My friend Lynnae and her husband became parents for the first time just a few months before Chris and I, so we had a sneak peek on what the transition to parenting might be like. Just after my friend’s baby was born, I went over to their house to watch the baby, and to give Lynnae a chance to take a nap. I was six and a half months pregnant at the time.

“Here, I can take her for a while and you can go upstairs and nap,” I said upon arriving.

“I haven’t showered since Tuesday,” Lynnae said, running her hands through her blonde hair. “And I don’t care.”

It was in that moment that I knew life would go bananas once the baby was born. (Thankfully, I quite like bananas.) On some days, diabetes management feels like a full time job, and I knew that motherhood was going to feel the same way, especially as I adjusted to the change. If my best friend wasn’t able to find the time or energy to shower every day, how on earth was I going to balance parenting an infant, recovering from delivery, and staying on top of all the diabetes duties?

I remember the first time I had a really bad low blood sugar, just after we brought the baby home from the hospital. She was tucked into the bassinet, perfectly safe and sound. Only she was wailing, with this loud cry and her bottom lip pouted out at an impossibly steep angle, because she was hungry.

“I’m sorry, baby girl. You have to wait just a few minutes so Mommy can have some juice, okay?”

I was standing at her side, my belly full of grape juice and a blood sugar of 43 mg/dl. My daughter needed to eat, I needed to breastfeed her, but I didn’t feel confident picking her up just yet. Of course, she started to cry just as the meter tossed that result at me. A perfect storm of chaos. My hands were too shaky and my brain wasn’t 100% tuned in to reality, so I felt it was safer to wait instead of picking her up while I still felt dizzy. She was safe and unharmed in her bassinet, but her cries were cutting through me and settling right in like barbed wire around my heart.

“Two more minutes, sweetie. Can you hang on?” I stood by the bassinet and stroked her hair while she cried.

“Why, Mom? Why aren’t you picking me up and feeding me? You’re right there! I can see you! I can smell you! I hear your voice! Why? Mommy, pick me up!” (Or at least that’s what I heard in her cries. I’m sure it was some variation on that theme.)

Within a few more minutes, I felt much better, blood sugar-wise. I felt capable of picking up my daughter and bringing her over to the couch so I could feed her. I kept a jar of glucose tabs on the coffee table while I fed Birdy, and the Dexcom eventually showed some arrows pointing north (it was like receiving a “thumbs up” from my CGM). And we were both fine. Birdy was fed, I was feeling better, and we moved on with our day.

But the guilt of not giving her what she needed, when she needed it, was something I needed to adjust to. I had to be in good form in order to take good care of my kid. Which meant, in that moment, tending to a low blood sugar ranked higher than picking up my daughter, in terms of safety. I can’t pick her up if I feel shaky. And I can’t let the sound of her cries make me make decisions that aren’t safe. But it was difficult, that struggle between what was best, overall, and what felt necessary, instinct-wise.

Leaving her in the bassinet while I went to drink juice was heartbreaking, because she didn’t understand why I wasn’t giving her what she needed. I didn’t want her to think her mommy is ignoring her. The time will come when she understands how this balance works. She’ll grow up knowing that food is sometimes medicine and that her mommy, though madly in love with her, can’t do it all at once.

Lindsay Rhoades, T1D and diagnosed at the age of 27, commiserated with me about this. “I didn’t find any balance at first. That’s just being honest. For as much as I owned and rocked the hell out of pregnancy, I failed miserably as a new mom with diabetes. My daughter is now two and I still struggle every single day, having to remind myself that my diabetes needs must be a priority, and yes, sometimes even over her wants and needs.”

Yes – a thousand times yes. This is the challenge of balancing diabetes and parenting: there is no real balance to be struck. The learning curve that comes with being a new parent is so steep and so sleepless that everything feels new, even the diabetes management tasks you could do with your eyes shut. What was once a priority (“Testing my blood sugar first thing every morning! I’m all over it!”) becomes something you remember as you’re giving your infant their second feeding and you’re throwing teeny, spit-up-covered onesies into the washing machine.

Jacquie Wojick agreed: “I’m still working on this [achieving balance]. I spent a lot of time in post-birth ‘screw it all’ state, partly because I was so busy taking care of a baby, and partly because I was burned out from the intense control I had during my pregnancy.”

This seems to be a common thread among all the moms I spoke with about pregnancy and subsequent motherhood – the intense diabetes management during pregnancy can lead to patches of diabetes-related burnout. All of that health-focused hard work is in pursuit of achieving a healthy pregnancy, so of course once the baby comes out, your brain needs some breathing room.

I was at Joslin for an appointment with my endocrinologist a few months after my daughter was born, deep in my own postpartum burnout. She and I reviewed my blood sugars, of which there were few.

“I’m not testing as much as I’d like to be. Sometimes, I’m taking a fasting number and then not checking again until early afternoon. I’m down to like four times a day. And I’m not going to lie; I wrote these numbers down this morning while sitting in the waiting room. I also made that one up,” I said, pointing to a number on the sheet that represented a “before bed” test, but was actually a “before bed” from a completely different day.

She looked at my pathetic logbook and made some notes in her computer system while I purged my diabetic guilt.

“I did great while I was pregnant, didn’t I? And then while I was breastfeeding? It seems like when it mattered for my daughter, I was able to put her first and make my health a priority. But now, I’m in wicked burnout. I don’t CARE about a shred of this crap. I don’t want to test. I am going through the motions in changing my Dexcom sensor and my pump sites. I’m just … pffft about the whole mess. Is that normal for women after they have a baby, after all the hyper-intensive management?”

We talked for a while about how extreme the focus is on diabetes management while pregnant. And how being checked on every week makes for a higher level of accountability, and as a result, a higher level of attention to diabetes. How can things go off the track when you’re being monitored so closely?

“It’s very common for women to feel burnt out after they have the baby, especially if they were also breastfeeding. That’s more than a year of very intense management. Hopefully checking in with me more often will help get you back on track, post-baby?”

This was a step towards balance, or at least restoring some balance to my life. I am not one to take a huge challenge and make a dozen changes, all at once. In order for me to make good health habits that stick, I need to shift things incrementally. The road back from post-pregnancy diabetes burnout and the return to taking responsibility for my diabetes again was a difficult one for me.

Not all new parents experience the burnout that I experienced after becoming a mom. Longtime PWD and friend Melissa Baland Lee felt that motherhood was an easy transition. “New motherhood came so naturally to me. I don’t remember having to balance much of anything. I mean, I kept glucose tabs and juice boxes on my nursing table, but there were so many other things to worry about now. It was nice to be able to shift all of that incessant diabetes attention from the child that cannot be tamed – ‘diabetes’ – to the child you had for so long longed to hold – your new baby.”

That relief in shifting the focus is something I can identify with, as preparing for and actually being pregnant was a year-long intense focus for me. Motherhood was a more jarring change, being asked to immediately balance baby with “regular life.” I didn’t find balance, at first, and I don’t find it regularly.   And this is not something unique to moms with diabetes; dads with diabetes are also making changes to their routine when a child is added to the mix. Diabetes-related tasks, and fears, can be exacerbated by an expanding family.

“Being a first-time parent with a colicky child, there’s honestly very little I clearly remember about the following few months. One of the only ways we could get our daughter to calm down was to walk around the neighborhood with her, and I remember having to do a quick blood sugar check before we headed out to walk around the block. I do remember some middle-of-the-night instances where I had to take care of my own low blood sugar instead of the crying infant, and that was a hard thing to do. As a parent, you want to do everything you can to make your child happy, but you also have to realize that in order to be able to take care of them, you have to be in working order first,” said Harry Thompson, diagnosed with type 1 at the age of eleven and the father of a two and a half year old daughter. “Thankfully my wife was very understanding. And we drank a ton of really strong coffee. I do remember that.”

Harry’s diabetes does play into their decision to expand the family, but more because of the residual effects of diabetes. “I worry that my diabetes will have a major influence on whether or not our daughter has a sibling. Not health-wise, but just from a financial standpoint. While diabetes thankfully isn’t quite as expensive as having a child, it’s certainly a considerable expense that chips away at the disposable income.”

Worrying about our children developing diabetes can be a pervasive concern in the parenting community, a natural worry considering the disease is something you know so intimately. In my family, most of the decisions we made were born out of the desire for our child to have the best start possible, but diabetes did play an influencing role. When it came to breastfeeding, I decided to do it as her mother, but I worked hard to keep doing it, as her mother with diabetes, considering all the research that shows breast feeding a child can help ward off a type 1 diabetes diagnosis. (But I’m not sure how confident I feel about that, seeing as how I was the only breastfed child in my family, yet I’m the only one with diabetes. It’s a roll of the dice.) My husband and I also decided to delay the introduction of gluten for our daughter until she was fifteen months old, based on theories about “leaky gut” serving as an autoimmune catalyst.

George Simmons, diagnosed with type 1 diabetes at the age of 17, is the father of two children who don’t have diabetes. “I have not tested them, at this point, because we all know the symptoms and will check if anything seems odd. But they’ve both told me that if they were ever diagnosed, they could handle it well because they know so much. My worry is that their kids will have it someday. That almost hurts more than if my own kids developed diabetes. I already feel guilt about even that possibility, like leaving the door open and unknowingly letting a cold burst of air into your warm home.”

Scott Johnson, diagnosed at age five, is undecided as to testing his own two children. “On one hand, I am not sure I want to know beforehand. I don’t want to live life just waiting for the bombshell to drop. But on the other hand, I feel that I am not contributing to the science of diabetes the way I’d like, and I worry that I might miss an important prevention study if either of my kids tested positive for antibodies. It’s not an easy issue to wrestle with.”

Harry was ready to tackle parenthood with his wife, but did have some specific diabetes-related concerns. “Knowing there’s a chance our daughter could someday develop diabetes, my wife and I took additional steps that we wouldn’t have done otherwise. We decided to bank our daughter’s cord blood, admittedly an investment with a potentially low return, but in the event that stem cell research advances to the point where cord banked blood could actually form the basis of a treatment for a disease, we wanted to prepare for that possibility.”

My husband and I haven’t had our daughter formally tested yet, either, for many of the same reasons. I had “the thought” a few times just after my daughter was born. Sometime it was a very wet diaper that made me furrow my brow. Sometimes she would nurse for longer than usual, and it would give me pause. Even though she seemed (and is) healthy and very strong, I still thought about taking out my meter and pricking her heel myself. And there have been a handful of times that I have tested my daughter’s blood sugar, just to put my mind at ease.


Overall, I try to shake the thought off the same way I shake off that thought every time I wonder if my niece or nephew might have dipped into my autoimmune grab bag. I don’t allow my brain to go there consistently. It’s not denial, but feels more like a protective measure taken by my mind, shielding my psyche from letting fear of something I can’t control permeate my daily life. I know what to worry about. I refuse to wait for something to happen that may not ever happen. If her health status were to change, my job is to ensure that her ‘happy’ status doesn’t.

Family physician, person with diabetes, and parent of twins, Sean Oser, did have to go through the diabetes diagnosis of one of his daughters. Managing her diabetes is a very different journey than managing his own. “I find it very challenging to manage my own diabetes and my daughter’s, often forgetting that they are not the same. I had to start unlearning the ‘rules’ of diabetes and recasting them as only my own. It was like suddenly learning that gravity doesn’t affect everyone the same way, and you feel stupid for not realizing it earlier. On top of that, there was tremendous guilt interwoven with everything, for of course I felt that it was purely my fault that Jessica had developed diabetes; I ‘gave it to her.’ I’ve gotten better at shelving the guilt and other emotions to tackle the practical reality of having to manage her diabetes and teach her to do the same, but I’m still learning.”

Guilt seems to be an emotion that hits hard when you are living with diabetes, and alongside the parental guilt that seems to come tucked neatly inside every package of diapers doesn’t make for a good combination. But diabetes does offer a certain level of perspective, as a parent, and one that offers your child a special perspective all their own.

Sean is concerned that his daughters worry about his diabetes, knowing they both also worry about his daughter’s diabetes. “It’s very hard to express, and even harder to teach, the subtle differences between concern and worry, and that one helps you to be prepared, while the other can be destructive. But my diabetes has definitely helped my children develop a sense of empathy and caring. They understand that disease does not equal disability, and they have seen that something most would mark as ‘highly undesirable’ can be turned into a source of tremendous strength.”

“My hope is twofold,” said Karen, living with type 1 since she was fifteen years old, reflecting on how diabetes touches her daughter’s life. “I hope that she realizes what a gift her healthy body is, and appreciates it and takes care of it, and relishes it. And I also hope that she doesn’t need to be held back by any adversity that may come her way. Life isn’t always easy, but she’ll be strong enough to handle that fact.”

As an athlete and occasional marathoner, Harry hopes his daughter will eventually understand the need to sometimes put yourself first. “I know that my diabetes is better controlled when I’m able to exercise regularly, and my body appears to be wired so that I can only commit to an exercise program if I’m training for a specific goal. I end up picking things like marathons, triathlons, and bike rides that require a considerable amount of training, often cutting into our precious weekend family time.”

“While I hate spending time away from my family because of training, I hope that our daughter will view the outcome as, ‘My dad ran a marathon,’ rather than, ‘My dad is sick.’ I know it will be a long time before she’s able to fully understand diabetes, but I don’t get a second chance to give her a first impression of it, and I want her to see that diabetes is not holding me back.”

“I hope my child learns about self-care,” offered Melissa. “My husband and I are from families where self-care was never modeled for us. We saw a lot of self-neglect at the expense of caring for others. Caring for yourself was considered selfish, but I hope that my generation of mothers is teaching their children that we care best for others when we meet our own needs, too. I want my children to watch me count my carbs and go to the doctor and meet others with my condition. I want them to know that we don’t hide in the dark with our worries or our obstacles. We take care of ourselves so that we can live life to the fullest.”

My daughter, if asked what my “job” is, responds, “Your job is to take good care of me.” And when I ask her what her job is, she replies, “To take good care of you and daddy.” She understands that part of taking good care of myself means paying attention to diabetes-related things that she barely understands, like my insulin pump, glucose meter, and the beeps coming from my Dexcom.

“I’m going to draw a picture of Grandpa,” she said to me one afternoon.

“Okay, so where do you start?” I asked her.

She put her finger to her lips, pondering. “How about … a head! With two eyes! And a nose with nostrils. And some cheeks.”

Birdy pressed her pen against the paper, painstakingly drawing a circle for the head, and then two eyes, and a nose. Her attention to detail shows me how much of the world she draws in through her eyes.

“So then … a neck?” She draws a nice, loooong neck. (Her people sometimes look like the kin of giraffes.) “And then some shoulders and a necklace?”

“Does Grandpa wear a necklace?”

“No …” She thinks again. “He wears a watch. And then … hmmm … what else he has on his body?”

“Well, people have lots of the same body parts. Two eyes, two ears, nostrils, teeth, a neck. Look at mommy’s body – what do I have that Grandpa also has?”

She surveyed my body closely. “We already has the eyes. And the nose. Oh, knees!!” Pressing the pen to her notebook with satisfaction, some knees were added to her drawing. “But not a Dexcom. You have a Dexcom. You has one but I don’t have one. Or Grandpa doesn’t have one. You have it.”

“True. But what does it do?”

“It goes ‘BEEEEEP!’ when you need glupose tabs or if you need some insuwin.”

“Right. It helps me do my job. Because what’s my job?”

“To take good care of me,” she says, concentrating hard as she gave Grandpa a second nose.

  *   *   *

You can purchase a copy of Balancing Diabetes if you’d like to read more.  As always, thanks for everything.

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