Skip to content

Posts from the ‘Diabetic Mommy’ Category

Unexpected Advocacy.

The last thing I wanted to do was take my cover-up off.

Chris and Birdy (and our friends and their daughter) were at a water park in New Hampshire where kids can run and play in safe-for-littles sprinklers, pools, and water slides, and as the adults, we were tasked with guarding the perimeter.  Pacing back and forth, the four of us kept watch on our kids, ready to jump in at any moment to help them climb a slide, pick themselves up if they fell, or slather on more sunscreen.

I didn’t care who saw my body.  Not really, anyway.  I’ve run miles and given birth (not simultaneously), so I know there are strengths and weaknesses to my frame, but it wasn’t the shape and curve of my body that made me want to stay covered up at the water park.

I didn’t want people staring at the diabetes devices stuck to my body.

“Oh, suck it up.  No one is looking at you.”

Of course they aren’t.  They don’t mean to.  But when someone walks by wearing a bathing suit with a few curious looking devices hanging off it, it’s hard not to notice.  My standard beachwear is a bathing suit with my pump clipped to the hip, the tubing snaked out to wherever the infusion set happens to be living, and my Dexcom sensor taking up more real estate elsewhere.  These items aren’t jarring, and people don’t snicker, but they do look twice because cyborgs aren’t the norm.

Most of the time I don’t think twice about who might look, but on this particular day, I felt self-conscious.  Why?  Who knows.  Who cares.  I just felt eh that day.

But motherhood dictated that my self-consciousness take a backseat to being part of Birdy’s waterpark experiences, so I sucked it up and removed my cover-up.  My insulin pump infusion set was stuck to the back of my right arm, the tubing snaking down and tucked into my bathing suit, where the pump was clipped to the back.  My Dexcom sensor was mounted on my right thigh.  Even though these devices are reasonably discreet, I felt like I had two giant toasters stuck to my body.


Birdy needed help climbing to a higher platform in the play area and I helped her do that, thankful that my pump was waterproof.  We ended up in the sprinkler pad for a while and I was thankful that the tape around my Dexcom sensor was strong enough to withstand the water.  After a few minutes, I got over the whole “blargh – I don’t want to wear giant toasters” feeling and got on with things.

“Excuse me.  Is that an insulin pump?”  All casual, the question came from behind me, where one of the park lifeguards was standing.  His arms were crossed over his chest as he confidently watched the pool, but his question was quiet.

“Yeah, it is.”  I wasn’t in the mood to have a full chat about diabetes, but I didn’t want to make him feel awkward for asking.

“You like it?”

“I like it better than taking injections.  I was diagnosed when I was a kid, so the pump is a nice change of pace from the syringes.”

“I bet.”  He paused.  “I was diagnosed last August and I’ve been thinking about a pump.  But I hadn’t ever seen one before.  Is that it?”  He pointed to the back of my arm.

“Kind of.  That’s where the insulin goes in, but the pump is this silver thing back here,” I pointed to the back of my bathing suit, where my pump was clipped.  “This is the actual pump.  It’s waterproof.”  A kid ran by, arms flailing and sending splashes of water all over the both of us.

“Good thing,” he said.

“For real.”  Birdy ran by to give me a high-five and then took off playing again.

“Your kid?”

“Yep.”

“How long have you had diabetes?”

“Twenty-seven years.”

He gave me a nod.  “Thanks for not making it seem like it sucks.  Enjoy your day,” and he moved towards a group of kids that were playing a little roughly.  I stayed and continued to watch my daughter play, very aware of my diabetes devices that, for the first time ever, didn’t seem quite noticeable enough.

 

(Also, today has been unofficially designated as a “day to check in” (hat tip to Chris Snider) with the DOC blogs that we’re reading.  I read a lot of diabetes blogs, but I don’t often comment because I usually want to say something meaningful, instead of “I like your post.”  (But I do like your post!)  But instead of finding that meaningful comment, I usually roll on and forget to return to comment.  NOT TODAY!  Today I’m commenting on every blog I read, because that’s the name of the game.  I love this community, and today I’ll show that through comments.  So please – if you’re here, say hello!  And thanks. xo)

CGM in the Cloud: Personal Preferences.

“Why would you want your continuous glucose monitor information in the cloud?”

Fair question, especially coming from folks in the CGM in the Cloud Facebook group, which is heavily dominated by parents of children with diabetes.

I didn’t want to answer, at first, because I didn’t want to say the wrong thing.  When I meet with parents of kids with diabetes, the instinct to protect them is undeniable.  I want to tell them stories about people who are thriving with type 1 diabetes – “Hey, have you heard about the guy who is running across Canada?  Have you heard about the woman who gave birth to twin boys?  Have you heard about the couple who met and fell in love via the diabetes community?” – because that is the perception of diabetes that feels best to share.  It feels good to share successes, triumphs, proud moments.  You can thump your fist against your chest in pride; we are not held back by diabetes.

This is what I want to tell the parents of kids with diabetes.  Their kids will be okay.  Because that’s true – their kids will be okay.  But not without compromise, and that’s hard to articulate because it seems to fly in the face of “your kids will be okay.”  I don’t like reminding people that their kids with diabetes will become adults with diabetes because this disease is forever.  It’s uncomfortable to admit that diabetes is hard.  It’s hard to find words to illustrate the concept of, “I’m fine … sort of.”

“Why would you want your continuous glucose monitor information in the cloud?”

I’ve had some low blood sugars that have rocked me so hard I couldn’t recover, even after I had technically recovered.  Whether you want to admit it or not, diabetes requires extra planning.  Even the best and tightest and most well-controlled diabetes still comes with the threat of lows or highs.  This is why glove compartments end up crammed with jars of glucose tabs, and why back-up insulin pens litter the bottom of purses.  I was always taught to hope for the best – you can do anything with diabetes! – but to have a plan for the worst, should it happen.  Never ride a subway without snacks.  Never put diabetes supplies in checked luggage.  Always check blood sugar before driving.

“Call me when you wake up so I know you’re alive,” is a phrase casually uttered by my mother when my husband is traveling, but the honesty to it stops me cold.  Does my mom worry that something will happen to me at night?

Before Birdy was born, I had a healthy fear of lows, but after she arrived, that fear became something different entirely.  Now, a debilitating low blood sugar doesn’t just touch me, but it could hurt her, too.  When she was a few months old, my husband went away on a weekend trip and it struck me for the first time that if I didn’t wake up, no one would be there to take care of my daughter.  I pictured her in her crib, crying, alone, and without care.  The idea of her going without breakfast hurt me more than picturing my own unresponsive body.

Sounds dramatic?  It’s dramatic as fuck, because diabetes is quiet, until it’s not.

“Why would you want your continuous glucose monitor information in the cloud?”

Why?  Because having someone else able to monitor my blood sugars makes me feel safer.  I can’t make insulin anymore, but I can create peace of mind for myself, and for my family.

So I’m not waiting.  I’m not waiting for bad things to happen.  I’m taking a preemptive bite out of fear by putting another safety net into place.  When I’m traveling for work, I will have my CGM data streaming to the cloud, and my husband and my mother (as needed) will have access to it.  When I am alone in a hotel room, my family will have the peace of mind knowing that they can see my blood sugars while I sleep.  Same for when my husband is traveling and I am alone with our daughter.  As much as I know the CGM companies are working hard to bring this technology to patients, waiting removes the safety net that would help me sleep better at night.

I am not waiting.

 

 

Put On Your Listening Ears.

Our backyard is big and lovely and fenced in on all sides so that when Birdy and I are playing outside, we’re both safe from cars and giant woodland creatures (except the ones that can shimmy underneath the fence … I’m looking at you, groundhog).  I don’t keep my eyes glued to her while she plays, and we can enjoy the sunshine and the garden without feeling paranoid about passing cars, wandering off, etc.

Which is exactly what sucks about the front yard, because that’s the part of the house that the road is closest to.  So while I still need to do things in the front yard (getting the mail, tending the front garden, drawing hopscotch in the driveway), I don’t do anything of those things without having Birdzone front and center in both my mind and my actual line of sight.

Yesterday evening, Birdy and I were working in the front yard garden (I was clearing out some weeds and she was making “houses” for worms we discovered underneath a rock), when my Dexcom started wailing from my pocket.  In retrospect, I felt a little “off,” but it wasn’t until I heard the low alarm blaring from the Dexcom receiver that the symptoms kicked in fully.

“Hey, your blood sugar is whoa, Mom,” Birdy said absently, placing another worm onto a pile of dirt.

“Yeah, we need to go inside and get some snacks, okay?  It’s important,” I replied, looking at the “UNDER 65 MG/DL” warning on the Dexcom screen.

Normally, she listens.  Especially when it’s about blood sugars, because Chris and I have talked with her a few times about how listening is important, particularly when I tell her my blood sugar is low.  But she wanted to stay outside.  She liked playing with the worms.  She liked being in the dirt and gardening.  She didn’t want to have to cut playtime short because Mommy needed a few glucose tabs that she should have brought outside with her in the first place.  [Insert Mom Guilt here.]

“Nooooo waaaaaaay!!!” she said, flouncing away from me and refusing to turn around.

Under normal circumstances, I would have laughed (because “No way!” is a great response), but I was starting to feel shaky and my brain cells connections felt loose, like thoughts weren’t coupling up the right way.  We were in the front yard and I knew I needed to gain control of all potentially dangerous situations in a hurry.

“We need.  To go.  INSIDE right now.  My blood sugar is low.  This is not a joke.” I said.

“No!  I don’t waaaaaaant to!!”

My blood sugar falls fast.  It always has.  I don’t get the long, lingering slides towards hypoglycemia but instead the quick, breathless plummets.  Knowing that I was dropping and watching yet another car drive by our house meant I needed to get control fast and without issue.

Before my body completely caved to the low blood sugar, I scooped up my flailing daughter and walked into the house.  She was freaking out and still forcefully asserting her right to “NOOOO!” but I needed sugar more than I needed her to like me.  A few seconds later, we were both safely contained in the kitchen.  I had a few glucose tabs and waited for my brain to acknowledge them.  Birdy pouted in the corner, staring at her hands and still mumbling, “No way.”

A few minutes later, I felt more human.  “Birdy, I’m sorry we had to come inside.  But my blood sugar was low and it could have become an emergency.  So that’s why you needed to put your listening ears on and come inside.  I wasn’t doing it to be mean; I was doing it to be safe.  Does that make sense?”

“Yes.”

“I’m sorry we couldn’t stay outside.  But we can go back out now, okay?”

“Okay.  I’m sorry I didn’t listen.”

“It’s okay.”

She turned around and pressed her hand into mine.  Something wriggled.  She smiled.

“I brought a worm inside.”

No way.

 

Mommy’s Little Pack Mule.

Running alone brings out the Spibelt, and I cram it full of my on-the-move necessities:  glucose tabs, Dexcom receiver, keys, and phone.  Even though it’s reasonably streamlined and doesn’t bother me too much to tote around all that stuff, it’s a bulkier system than, oh, I don’t know … making my own insulin.

But lo!  The child rides a bike!  And insisted on having a bicycle basket!  To which I said, “Yes!  Excellent idea and can you please carry all my shit, too?” only I did not cuss at the child!

The miles might be logged a little slower than when I’m by myself, but there’s nothing more convenient than making use of her bike basket to carry all my diabetes stuff, and I love sharing some outside play moments with my daughter.

And she likes being in charge of such important things, since she is a “big girl” and can “carry the glucose tabs because then if I want a very, very, very small bite of a glucose tabs, I can just reach in and have one, right, Mawm?”

“Sure.  But only if you make sure you slow down if I need a glucose tab, okay?”

Bartering with my happy little helper of a diabetes pack mule.

Recapping #dayofdiabetes.

My documented day of diabetes wasn’t an all-star showing.  I didn’t hit one out of the park, but it wasn’t a complete shut-out, either.  I’m no bush-league player, so I knew how to handle the things that kept coming out of left field, even when a diabetes triple-play was in effect (morning highs! then a few lows! then a pump site change at midnight!)  But there’s no cure on deck, so I keep swinging for the fences and taking it one base at a time.

The day started with a higher blood sugar than usual, which I found frustrating because overnight numbers are usually my stable-zone (of course there are outliers, but my A1C stays stable largely in part to having overnights reasonably nailed).  Kicking off the day with a little grumpiness isn’t my style, but that’s how it started yesterday:

Sometimes my blood sugars don’t respond quickly to insulin, and I have to kick start things with a little exercise.  Self-employment affords me a flexible schedule, which I’m very grateful for, letting me jump on the ellipmachine for a few minutes to help move the correction bolus into action.

But after the initial morning high, blood sugars were oddly low yesterday.  I spent more time than usual chomping on glucose tabs.

Low blood sugars didn’t just jack up my day.  They cramped my parenting style, too, as I waited for the glucose to hit my system and reboot my brain.

Work still needed to be done, though, so I found myself prepping for conference calls in an unusual way yesterday:

Family dinner was punctuated by the soundtrack of diabetes.

My bedtime routine was ambushed by the need for an insulin pump site change (which I despise doing before bed, due to the ambiguity of the pump site working properly, having a post-site change high blood sugar, [insert other variables here]).

But overall, the technology I use to keep track of my diabetes protects me more than it inconveniences me, and I’m grateful.

And then the day was done. Over! Today is another day. As is tomorrow.

“It’s like deja vu all over again!”

Plastic Apples and Measuring Cups.

Her desk was anchored on either side by tall bookshelves crammed with pretend food.  Plastic fruit – apples, bananas, oranges, kiwis that looked like fuzzy dumplings – and the cardboard shell of cereal boxes.  Plastic slabs of steak with edging to make it look like it had a pat of butter melting on top, and the entire plastic carcass of a chicken, woefully untrue to size, making it the same size as one of the kiwi dumplings. Measuring cups and food scales, lists and charts, meal plans and index cards covered with suggested serving sizes.

It always felt embarrassing, seeing the nutritionist and the dieticians, especially when I was in my teens.  I struggled with my weight as a kid but didn’t ever dip into “overweight,” just more settled on the heavier end of the approved spectrum.  I hated meal plans and the emotional influence of food on my life.  Visiting the plastic food lady as part of the flow every few endocrinologist appointments felt shameful, and I wondered what my classmates would think if they knew I was lectured about eating and food every few months.  Would they know how complicated my relationship with food really was?  Dietician appointments felt like mini-fat camps, and even though I did feel better-informed leaving the appointments, I still felt stupid and ashamed that there were required in the first place.

Moving forward a few decades, diabetes is still very much in play.  I don’t see a dietician as often now as I did when I was growing up, but I do attend a lot of diabetes conferences where registered nurses, dieticians, and nurse educators present, giving me access to refresher courses on food, eating well, and the latest in food and diabetes research. The plastic food is still in play, only the plastics aren’t relegated to my CDE’s bookcases anymore.  Now, the plastics are invading my home.  My daughter’s room is awash with kitchen playthings and miniature versions of what my dietician used as visual aids back in the day.  We talk quite a bit about food and why we eat the things we do.  I try not to let my food-through-the-lens-of-diabetes mindset invade how she sees her plate, even though it’s hard, since we spend so much time together and she sees so much of my diabetes day-to-day management (attempts).

“We need to eat healthy foods so we can grow to be strong and smart and healthy,” I tell her.  “Yeah, and we always need to eat something green with our meals,” she adds, knowingly.  “And sometimes we have juice in the fridge, but it’s for your low blood sugars.”

I don’t want my daughter to think that there are so many food “rules.”  I want her to eat things that make her feel good and that taste good, without looking at her plate and thinking her value as a person rests there.

In her room, she ‘cooks’ up a storm, throwing random items into the plastic stock pot on her pretend stove.  “We need an eggplant, and a hard boiled eggie, and some ash … ash … ASHparagust, and Wonder Woman,” with all of the aforementioned tossed into the “boiling” water.

“What are you cooking, Birdzone?”

“I’m making soup. It will be so delicious. When I’m done, you can have a bowl.”

“What’s in it?”

“Don’t worry, Mommy.  There’s something green in there.  There’s ashparagust.”

March is National Nutrition Month (more about that on the Academy of Nutrition and Dietetics website), and this year’s campaign encourages people to “Enjoy the taste of eating right.”  The phrasing of that message is so hopeful, and without residual shame:  enjoy.  Enjoy the taste of eating right, whatever “right” might be for you.Yes!  I’d like to!  I’ll do that!

My hope is to eventually shake the preposition off “eating with diabetes” and just focus on “eating.”

Hashtag Motherhood with Diabetes.

“What is that?” my daughter’s friend asked me from over her plate of scrambled eggs as I was watching the two kids for the morning.

Before I could answer, my kid piped up, “That’s her insulin pump.  It has insulin in it.”

“Oh,” the other three year old answered, mouth full of eggs.  “What’s it for?”

“It has my medicine in it, for diabetes.  Remember?” I said, reminding my daughter’s friend of conversations we had at the beach over the summer, when she had previously asked me about my insulin pump.

“Yeah.  Hey, what’s that tunnel?”

Birdy interrupted again:  “That’s the tubing and it goes into her body and the insulin goes in the tube – insulin comes from a small bottle you cannot touch – and the tube is really squishy and Loopy likes to chase it,” and right on cue, the cat came leaping out of nowhere and batted at the pump tubing dangling between my hands as I primed my pump.

Both girls laughed.  “LOOPY!!!”

Loopy twirled, burped, and scampered back into living room in a flurry of gray fur.  The girls resumed breakfast, and I resumed prepping my new infusion set.

“Sometimes my mom has whoa blood sugars but most of the time we just eat the glucose tabs from the Glucose Tab Man and then it’s all better and we go back to playing with the dollhouse,” Birdy offered.

“What’s a glucose tab?” her friend asked.

“Oh, those are these!!”  Birdy leapt down from her chair and ran off to grab one of the blue jars.  “Sometimes mom lets me have a very, very, very small bite.  Do you want a very, very, very small bite?”

“YES!”

Which is how my daughter and her friend ended up chasing their scrambled eggs with very, very, very small bites of wildberry glucose tabs.

Follow

Get every new post delivered to your Inbox

Join other followers