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Posts tagged ‘parenting with diabetes’

Eleven and the Harmonimato.

Hey there little Guy,

“YEAH!” is your favorite word.  You are a crawling affirmation of everything.  You make me feel a teeny bit like I gave birth to Lil Jon.  YEAH!

“YEAH!!”

All the time, from you.  “YEAH!!”  At the grocery store and in the car and at Grammie’s and when we pick Birdy up from camp.  “YEAH!”  While you’re eating, when you’re in the tubby, at the airport.  “YEAH!”

You crack me up.

Tiny tomato man, you are eleven months old.  Just a few weeks shy of marking your first year as part of our family, and you might be the busiest little person I’ve ever encountered.  You aren’t walking (yet) and you don’t have even the whisper of a tooth (despite excessive drooling and gnawing on my shoulder anytime I’m carrying you), but you seem SO BIG and you are on the move all the damn time.  The days of the little baby Guy are way behind us as I watch you rocket towards toddlerhood, chasing cats and destroying block towers as you go.

Foods that make you happy?  Peanut butter, bananas, black olives (you’re weird), and fresh baked gluten free banana bread.  And your new love for the tomatoes that have finally sprung up in our container garden on the deck is a sight to see.  (You also play them like harmonicas.  Harmonimatoes?)

And you have discovered my diabetes devices.  They’re toys to you.  The smooth, shiny screen of my insulin pump astounds you and you like to wrap the tubing around your fingers.  My CGM sensor has become a climbing tool when you use me as your human rock wall.  And sometimes when you hug me, I have to move my pump from my bra to keep you from bonking your head, but that’s par for the course.  Welcome to life with mommy’s devices, kiddo.

Without a doubt, your favorite person on the planet is your sister.  You two hang out in the living room, surrounded by your toys, giggling madly at one another.  She makes silly faces, you lose your mind laughing.  She sings you songs and you yell, “YEAH!” to encourage her to keep going.  When she lets you crawl all over her, you gently but deftly pick her nose and grab her braids and smother her with baby kisses and she loves every, single minute of it.  You two are two loud peas in a pod, despite the years between you.

And as your teeth are poking at your gums to come in, Birdy’s are hinting towards falling out.  Just after you turn one, she’ll climb on the bus en route to second grade.  And yet you are so the same.  Neither one of your will stop talking.  Both of you have infectious grins.

And both of you fill my heart in a way that’s beyond words.

Happy almost-birthday, little Guy.  Yeah!!

Love,
Mama

Recipe for FFL.

Want to make Friends for Life?  Here’s how:

Ingredients:

1 large Coronado Spring
Millions of humidity molecules
3,000 family members who live with diabetes
1,000 (estimated) Mickey Mouse waffles
22 bowls of glucose tabs
Dozens of supportive siblings
Hundreds of orange bracelets
Hundreds of green bracelets
Several buffet tables of carb-counted food
Add sports central, support sessions, and learning workshops to your taste

Directions:

Take your humidity molecules and mix with the Coronado Spring.  They will combine to become as hot as possible.  Move into your hotel room and be thankful for the conditioned air.

Assess your pancreas. Salute your pancreas if it functions properly and don your orange bracelet with pride. If your pancreas is a thumbs down as far as insulin production goes, put on your green bracelet with pride as you are not alone with diabetes.

Attend focus groups and meet with companies who aim to make a difference in the lives of people with diabetes.  Between meetings, visit the pool and go down the waterslide, mingle with CWD staff and friends at Pepper Market, and give a happy wave to strangers-who-are-not-strangers.

Have fun.  Enjoy healthy meal options that are carb counted (and gluten-free if that’s your jam).  Dance with the DJ at the banquet.  Meet the Disney characters at breakfast.  Get a retinal screening.  Learn about things like diabetes and exercise, and going to college with type 1 diabetes, and new technology options, and parenting and pregnancy.  Collect at the social spots in the evenings and talk about LIFE and some diabetes but not entirely diabetes.

Be thankful that companies and sponsors and donors have come together to make an event like Friends for Life possible.  Thank them for their financial contributions and support.  Thank the fellows.  Thank the scholarship programs.  Thank the staff for their tireless efforts.  Thank your friends and families for being part of this experience with you.

Rinse and repeat for several days, until your heart is full and your voice is gone and the corners of your mouth feel stretched to the brink from smiling.

Disclosure:  I could not be prouder to be a member of this organization as a board member, part of the adults with type 1 diabetes faculty, and a grateful PWD attendee.  My travel and lodging are covered by the organization, but my opinions and dedication to the cause are my own.  Huge thanks to the staff, supporters, and sponsors who make Friends for Life possible.  

If you’d like to make a donation to support CWD, please click here.

 

Five Months.

To my Guy,

Five months old!  (And I’m pretty sure I forgot to write you a letter at the four month mark, so here’s a quick high five for turning four months old a bit back, too.)  Five months ago, I was excitedly awaiting your arrival and folding piles of baby clothes.  Now, I am greeted by your big, toothless smile every morning while you excitedly slap your legs against the crib like a mermaid.

Sorry.  MerMAN.

You are a tiny sweet potato with an appetite for both pears and destruction.  Despite being on the more petite side at the moment (single digit percentile for weight and barely double digits for height), you eat like you are a teenage boy.  In the last few weeks, I’ve had trouble keeping up with your food demand, so we’ve started working in the occasional formula bottle here and there.  I’m still breastfeeding and pumping as often as possible, but you need to eat, so formula is at the ready for the moments when I’m not.

You’re more tolerant about tummy time these days and you spent a lot of time on your play mat.  (Although when you’re feeling done being on your stomach, you fling yourself to the side to roll over, like you’re trying to roll down a hill.)  Just like your sister, you are content to holler happily at the plush animals dangling overhead.  This morning, though, you slammed a rattle against your head and engaged in your first “crying because of little injury” jag.  Real tears. It sucked.  And now you are giving that rattle some major side-eye.  Welcome to the world, little Guy.

Real food is also a recently introduced thing, and you’ve joined us at the table in your very own (belonged to your sister and is more than six years old but whatever – we like to save stuff) high chair.  The food you’ve tried so far are pears, and that first go wasn’t very successful.  Lots of confusion about what on earth a “spoon” is and also WTF “pears?”  But now, a few days and many attempts later, you wait with your hands on the high chair tray all excited, ready for the SPOON! and PEARS! and the mess that follows.

At the table. #milestone

A photo posted by Kerri Sparling (@sixuntilme) on

In the last few weeks, you’ve gone on your first trip to New York City to meet some friends, slept over at your Grammie’s a few times, and you’ve decided that Loopy is your favorite cat because she has a fluffy tail and she walks circles around you and makes you laugh, while Siah is the one who watches you sleep from afar, not daring to go closer but keeping tabs on you all the same.  The world is starting to crack open and let you peek inside, and it seems like you’re a fan.

It still amazes me, even though I’ve done this once before, how quickly the weeks change you.  You used to be a little thing with half-closed eyes and unable to hold up your own head, snuggled carefully and warmly against me at all hours.  Now you’re this much sturdier little man, smiling all the time and entertained by books, patty cake, and the series of foolish songs we make up and sing to you.  I’m afraid to blink because you’ll be crawling, then running, then refusing to eat your eggs before school every morning.

Time goes by very quickly, and I’m trying to appreciate these moments when you are little.  

Thank you for being part of our family. And for sleeping. And for the smiles that make me feel like I must be doing something right. You’re my littlest friend and I love you bunches.

Love,
Mom

Word Choice.

“Mom, why do you wear that bracelet again?”

She knows why, but every few months, she asks again.  Why do I wear a medical alert bracelet?  Why is that thing as important to leaving the house as having my keys?

“I wear it because it says I have diabetes, just in case someone needs to know.”

“Why would they need to know?”

“In case I wasn’t able to say it myself.  Like if we happened to be in an accident or something, or if I was asleep.”

She thinks about this.

Medical alert bracelet #diabetes

A photo posted by Kerri Sparling (@sixuntilme) on

“Is this why we have a house phone?”

“Yes.”  She knows the reason but asks anyway.  We decided to get a landline telephone in the event that there was a storm that knocked the power out, or if we had a babysitter and needed to call the house.  Or if my husband or children ever needed to call 911 on my behalf.  “We have a house phone on the waaaaay off chance that I’d have trouble waking up because of a low blood sugar.  You know, if I was passed out.”

I forget that the words we use matter.  That they are easily confused and conflated.  That she’s just a little kid.

“Passed out?!!”

“Yes, but that’s a very rare thing.  It hasn’t ever happened to me.  It probably won’t ever happen, but it’s smart to be prepared, just in case.”

“PASSED OUT?!!!”

It was then that I remember hearing her and her friend talking about her friend’s grandmother, who had recently passed away.

“OUT, honey.  Not AWAY.  Passed out means I would be having trouble waking my brain and body up and need extra help.  Not dead.  It’s very different,”  I scooped her up and held her close, aiming to hug the panic away from her as I listed all the reasons why passed out was different from passed away and also how it wouldn’t ever happen to me, right?  Right.

The reality of my own thoughts every night before bed stood in contrast to the confidence in my voice talking to Birdy.  The thought is fleeting, but also sharp and cuts through my mettle, reminding me that diabetes looks easy and seems quiet but exists with an undercurrent of worry.

And I’m learning that I’m not the only one who worries.

“How do you explain diabetes to her?”

“How do you explain diabetes to her?”

How do you explain diabetes to your kid?  I wish there was a strategy, a predictable path that conversations about health and wellness could take, like when my daughter brings out The Game of Life and I want to replace all the normal life stuff with the diabetes versions I marked as milestones along the way.

  • First time checking my blood sugar on my own.
  • First time giving my own shot.
  • Explained diabetes to a new friend.
  • Went to a sleepover and my mom didn’t come with me.
  • Earned my driver’s license and permission to get a car after proving I would check my blood sugar every time before driving.
  • Going to the endocrinologist by myself.
  • Moving out and living alone.
  • Managing emotional and physical diabetes-related complications.
  • Creating a family (this would earn me more people in my little car, right?  “People” being the little matchstick shaped things you shoved into the plastic car.)
  • Living beyond diabetes.

Trouble is, there’s no set path that diabetes takes, even with the best intentions and optimal care.  And the milestones aren’t always triumphant.  I’d be inclined to roll again if I landed on the “Manage diabetes distress pockets” or “Deal with health-related discrimination” spaces.

How do I talk about the emotional stuff tied to diabetes without shuffling those emotions right onto my daughter?  When she asks questions like, “Does diabetes scare you?” or “Are you afraid I’ll get diabetes, too?” I’m reaching to roll again.

How do I explain diabetes to my most beloved Bird?  I don’t.  Not entirely.  We have conversations about normal things, with diabetes built into the context clues.  When she was very small, we talked about how she should not push the buttons on mommy’s pump.  As she grew up, we talked about why I wore an insulin pump and other mom’s did not.  Sometimes conversations about low blood sugars came up and we dealt with those as part of the moment instead of scheduling a sit-down discussion with flash cards and a quiz at the end.

But she’s tuned in, and she notices things.  And in the last year or so, she’s elected herself captain of my support team.  If my Dexcom low alarm goes off, she drops everything she’s going and comes over and wraps her arms around my waist.  I don’t know what prompts her to do this – sometimes I think it’s the vacant look in my eyes when I’m low that makes her feel the need to double-check on me.

“Does this help, Mom?”

“It does,” I say, through a mouthful of candy corn.  “You help.”

If she were to list five things about her mom, diabetes might be on that list.  But it comes with expectations of conferences at Disney World and friends around the world, and sure, there are doctor’s appointments and moments where I need a few extra minutes and sometimes I am distracted by the need to reapply a sensor or prick my finger and all these things that beep, but that’s life with this disease. Diabetes is a cumbersome to do list that comes with a monster under the bed who I don’t often make eye contact with.

But we manage.

Explaining diabetes to her is its own challenge.  But sometimes, through her eyes, she re-explains diabetes to me.

 

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