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Posts tagged ‘diabetic mommy’

It’s a Good Tune.

“BEEEEP … BEEEEP… BEEEEP!”

“Mom, your Dexcom is making noise,” my daughter says casually, as we’re kicking the soccer ball around in the basement (because we’ll never, ever go outside again because snow).

“It is. Hang on a second,” I told her. A click shows that my blood sugar is over my high threshold, with a few yellow dots taking up residence on my graph. I’m not totally worried, though, because a check of my pump reveals some insulin still on board. I decide to let things play out and see where I land a bit later.

“I’m fine, kiddo. Let’s keep playing.”

The Dexcom has been part of my daughter’s life for as long as she can remember. When she was very small and figuring out her letters for the first time, I remember her running a tiny fingertip along the bottom of my receiver – “D-E-X-C-O-M spells … whaasat spell, Mama?”

“Dexcom. That’s the name of the machine.”

(Unlike most kids, my daughter’s list of first words included “pump,” “Dexcom,” and “diabeedles.” Maybe she’ll grow up to be a doctor? At the very least, this knowledge base has given her a leg-up on winning a few topic-specific spelling bees.)

As Birdy grew older, she started to understand some of the information that different diabetes devices provided. We’ve talked a little bit about how three digit numbers on my glucose meter that begin with “2” most often require me to take some insulin from my pump (same goes for the ones that begin with “3,” only those also come with some curse words), and how when the Dexcom makes an alarm sound, I need to check it and take some action.

“But that alarm – the BEEEEP … BEEEEP… BEEEEP! one – is one we can ignore, right Mom?”

“Ignore?”

“Yeah. When it goes BEEEEP … BEEEEP… BEEEEP, you don’t always look at it. But when it goes like this,” she raises her hands up in front of herself, like she’s sneaking up on something, “BeepBeepBeep really fast, then you look right away and get some glucose tabs.”

Funny how much she notices, how much of my diabetes self-care ritual has become a natural part of our time together.

“Kind of. The long beeps mean my blood sugar might be higher, but it’s not an emergency. The short beeps mean I have low blood sugar, and I need to get something to eat so it doesn’t become a big deal. Does that make sense?”

“Yeah.”

The sounds of the low and high alarms ringing out from my Dexcom receiver have become familiar, like a subtle (and sometimes not-so-subtle) soundtrack for my diabetes life, but I didn’t realize until recently that they are also sounds that remind my daughter of her mother.

The other morning, I heard Birdy walking into the bathroom to brush her teeth, and she was humming a little tune to herself, one that I recognized.

“Hey you. Are you singing a song?”

“Yeah. It’s the Dexcom beep song. It’s a good tune.” She grinned at me, toothbrush hanging out of her mouth.

Wild Krattsabetes.

Wild Kratts have invaded my house in a big way.  It’s okay, because Birdy loves watching them and she learns all this random stuff about animals.  (“MOM! The lion’s mane is the same color as the savannah grass,” yelled from her car seat as we’re driving.  So I’m learning too, apparently.)  She dons her version of a creature power suit and goes leaping all over the basement, pretending to be a lemur or some other critter.

“MOM!!  He has a Dexcom!!” she said one morning.

“What’s that?” I asked her, coming over and sitting next to her while she’s watching television.

“Look!” and she points to the screen.

Sure enough, the wrist communicator that the Wild Kratts use to talk to their team back at the Tortuga looks almost exactly like my Dexcom receiver.  (Please forgive me, because that whole sentence made complete and absolute sense to me.)  See for yourself:

“You’re right, kiddo!  That looks a lot like my Dexcom!”

“Yeah, but they use theirs not to keep an eye out for whoa blood sugars but to talk to Aviva.”

“Who?”

“Aviva.  She helps the Wild Kratts by building their creature power suits.”

And here I thought Aviva was a glucose meter from Roche.

 

“Instead of making insulin …”

“What’s insulin?” my daughter asked me as I was buckling her into the car seat.

She knows the word because vials of insulin sit where the butter usually resides in other people’s refrigerators.

“Insulin is a hormone that people’s pancreases make.  It helps make the foods we eat into something our bodies can use for energy.  My pancreas doesn’t make any insulin, so I put it into my body using my pump or the needles,” is my explanation.

“Right.  And that’s why you have diabetes and my dad and I don’t,” she replies.

“Exactly.  My pancreas is lazy sometimes.  Instead of making insulin, maybe my pancreas goes to the beach?”

She latched onto this idea immediately.  “Yeah!  Instead of making insulin, your pancreas goes in a ferris wheel!”

“Instead of making insulin, my pancreas has an ice cream party!”

“Oooh, oooh!  Instead of making insulin, your pancreas goes to the library and listens to story time and then takes out three books!”

“Very specific!”

The game went on for the entire car ride home.  “Instead of making insulin, your pancreas writes a letter to Santa!”  “Instead of making insulin, my pancreas takes a trip around the moon!”  “Instead of making insulin, your pancreas jumps on a trampoline!”  “Instead of making insulin, my pancreas grows peanuts on a peanut farm!”  “Instead of making insulin, your pancreas hangs out on Sundays with Batman!”  (On Sundays only.)

As the car pulled into the driveway, we were giggling madly about the adventures of my under-employed pancreas, outlined in great detail.

“Mom, your pancreas is extremely silly.”

“It totally is.”

“I wish it made insulin, though,” she said, snapping reality back into place in that plain, matter-of-fact way only she can.  She gave me a grin that made my heart swell and my pancreas shift uncomfortably in its seat.

“Yep.  Me too, love.”

Birdy the Kid and Jerry the Bear.

“Jerry has diabetes, like you do, mom.  So I give him food and insulin and check his blood sugar and he likes to play archery.”

A brief pause as Birdy rand her hands over Jerry’s soft bear ears.

“Mom, what’s archery?”


A photo posted by Kerri Sparling (@sixuntilme) on

[Disclosure:  Jerry was a gift from Hannah to Birdy.  We did not purchase Jerry.]

Yesterday, Hannah Chung from Sproutel kindly visited Birdzone and I to drop off a new friend for my daughter:  Jerry the Bear.  Jerry is a stuffed animal bear who has type 1 diabetes, and part of snuggling him and playing with him can also include checking his blood sugar by pressing a button on his paw.  Developed to help kids make sense of their own diabetes diagnosis, Jerry helps normalize diabetes by being a kindred spirit who also needs insulin and glucose tabs. 

He’s a stuffed animal who happens to have diabetes.  Similar to how I’m a mom who happens to have diabetes.

And that’s exactly how I want my daughter to learn about life with diabetes, with the constant, comfortable caveat that diabetes provides a to-do list, but it can be done.  And it can be fun.

Birdy knows quite a bit about diabetes, but mostly the brass tacks sort of stuff.  She likes to press the button on my lancing device (though she’s always surprised when a drop of blood comes out – “Does that hurt, Mom?”  “No, kiddo.”  “Are you sure?  Because I see blood.”), she prides herself on selecting the spot for my insulin pump infusion set, and she has a solid grasp on the meaning of the sounds ringing out from my Dexcom.

What she and I have not discussed, however, is what so many of the numbers mean.  She knows that my glucose meter gives me numbers of some kind and that I respond to them with certain sets of actions, but the numbers aren’t in context.  165 means the same at 50 means the same as 433 … nothing.  They are just numbers, or at least they were, until yesterday.  Yesterday, through her interactions with Jerry, Birdy learned what “high” and “low” look like as glucose numbers.

“Jerry is high.  See?  His number is one-seven-six.  He has to pee.  I need to give him some water and some insulin,” she said to me yesterday and she and Jerry were coloring at the kitchen table.

“Oh yeah?  So what will you do, then?”

“Mom, I already said I will give him insulin.  And some water.  I know what I’m doing.”

“Okay then,” and I turned away so she couldn’t see me smirking.

Later in the afternoon, she asked me how many glucose tabs she needed to give to Jerry if his blood sugar was low.

“How many do I usually take?” I asked her.

“You stack them up on the counter.  You take four.  Is four right, mom?”

(And this is where she teaches me something  – I do stack up the glucose tabs on the counter before I eat them.  I take out a set number and make sure I eat precisely what I take out, to help avoid over-treating and to also help protect me from forgetting to eat enough in the flurry of a hypoglycemic episode.)

“Yes, four should do it.”

“Okay.”  She “feeds” Jerry four glucose tabs and checks his blood sugar.  “Oh, I fixed it.  He’s not low anymore.”  She smiles, satisfied.  “Hey, do you know that if I smush his fur down and draw my finger through it, I can make eyebrows for Jerry?”

I want her to continue to draw eyebrows on Jerry.  Just because his little stuffed pancreas doesn’t splutter the way it should doesn’t mean he should have weak eyebrow game, yeah?

As she learns, I want her to feel safe and feel protected, empowered to ask and to help.  Resources like Jerry aren’t just for kids with diabetes, but for kids touched by diabetes on all levels.  I want my daughter to learn about my diabetes absent discussions about complications, fear, and pity.  I want her to see type 1 diabetes in the context of my actual life, which is filled with joy and chaos unrelated to my health.  She should know about this health condition because it’s part of what I do every day, and part of what she does, too, after a fashion.

Because it’s not about diabetes; it’s about life.

HypoPedicure.

“Mom, can I [something something] ?”

“Sure, kiddo,” I responded.  But I had no idea what she was asking me – her words were swirling around in the fog of my brain.  My blood sugar was 38 mg/dL and my Dexcom was wailing.  Chris was a few feet away, stirring something on the stove while he kept an eye on his wife.  “My blood sugar is really low, so I’m going to sit here for a few minutes.”

“Okay, that’s fine.  Do you need some glucose tabs?” she asked, sitting on the floor near my feet.

“I already had some.  I’ll be okay in a minute.  Don’t worry.”

What was directly in front of me hard sharp edges of focus, but everything on the peripheral was hard to see.  My body was concentrating on chewing and swallowing and trying to slow down the speed of my heartbeat in my ears.  I knew stable blood sugars were coming, but they needed a glucose jump-start.

“Okay, Mom.  I’ll just do this while I wait.”

And it wasn’t until later that night, after she had gone to bed and once I was readying myself for sleep, that I realized she spent the duration of my hypoglycemic episode painting my toenails bright pink with a glitter topcoat, globs of glitter and pink stretching all the way up to my ankle.

“Do you wish you didn’t have diabetes?”

“Hang on two more seconds, kiddo.  I need to check my blood sugar before we go.”

She watches me casually as she slides her arm through the sleeve of her sweatshirt.

“Mom, do you wish you didn’t have diabetes?”

She asks me this question all the time now.  While diabetes is not a secret in our house, it’s not a hot topic of conversation.  Instead, she sees what my pump looks like and knows what my Dexcom does, and she likes to push the button on my lancing device to deploy the needle when I need to check.  She knows that glucose tabs are for low blood sugars and that I apologize for being unreasonably grouchy when my blood sugar is frustratingly high.  A few times she’s seen me cry because I was low, but I try to explain to her that it feels bad in the moment but then I feel okay.  Most of this becomes threads in the fabric, but lately, she’s been asking me that one, specific question on repeat.

“Mom, do you wish you didn’t have diabetes?”

My answer is generally the same every time, because I don’t want to lie to her.  I am not filled with diabetes-loathing, and even though this disease is the single biggest negative issue I deal with every day, I don’t feel entirely devoured by it.  But I don’t fucking like this disease.  It’s a complicated half-way.  There are moments that are compromised, but my life as a whole is not.

“I don’t like having diabetes, but I’m fine.  I like having you.  And having Daddy.  And having Looper and Siah Sausage,” and then I deflect to something else because I don’t want to have long, drawn out discussions with my introspective daughter who has already queried me about how many birthdays people have left.

I think about how diabetes is something normal to her, and always has been.  Moms wear insulin pumps, and it furrowed her brow for years that my friends here at home don’t have a pump clipped to their hip.  Moms carry purses filled with crayons and hand wipes for kids, and then a jar of glucose tabs for when the car is hard to find in the parking lot.  Mom’s bike basket has a bottle of water and a Dexcom receiver in it.  Moms sometimes say, “Let me check my blood sugar first,” before going outside to play.  This is her normal, too.

“Mom, are you glad I don’t have diabetes?”

“I am glad you are exactly who you are.  If you ever get diabetes, we’ll handle it.  When it comes to cookies, we’re the toughest,” and I breathe out as slowly, slowly, slowly as I can.

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.

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