Wednesday, May 15, 2013

Diabetes Blog Challenge #1: Share or Not to Share

Diabetes Blog Challenge Week #1: 

Share and Don’t Share

I work in healthcare, and although I can understand a plethora of medical conditions, I cannot fully understand what it’s like to live every one.

I never knew how helpless a parent felt when their baby was in the NICU until my twins were in there.  I never knew how much a C-Section hurt until I had one (not that that would stop me from being up in 8 hours).  I’ll never know what it’s like to have Gestational Hypertension.  I’ll never know what it’s like to lose a fetus.  I can “nurse” any patient under any condition, some times better than others, but I’ll never really know unless I’ve walked in their shoes.  The things I have experienced have made me a more empathetic nurse, but I can never fully “know” it all. 

Quarterly, my sons have to visit the Endocrinologist.  Quarterly, these healthcare professionals get a glimpse into my life. It’s just a glimpse.  Just like I work with pregnant women and newborn babies every working day, I'm only getting a 'snapshot' into their entire world. They work with Type One Diabetes every working day.  But, at the end of the day, they get to go home and think about other things.  No fault of their own, but most do not understand what it’s like to live with this beast every minute of every hour of every day. They are only getting a snapshot of our busy, crazy, hectic, beautiful world.

Beyond the smiling faces of my cute boys; beyond the weights and measurements; beyond the numbers on the last two weeks chart; beyond that dreaded “Mommy Report Card”, the Hemoglobin A1C…there’s so much more.  I wish they could see how Diabetes takes a piece of almost every facet of our lives. 

1.     When we wake up, the first thing we do is make sure our children are alive. *poke, poke*
2.    Get ready for school, check the morning blood sugar, eat breakfast.
3.    Once breakfast is selected, now Daddy and I have to THINK about breakfast.  What is he eating?  How much of it is he eating?  How is this particular meal likely to influence his blood glucose for the next few hours?  Did he finish his meal?  (All the while, someone has to feed the dogs, clean up, referee the fights, and get themselves ready for another day).  Voodoo, Science, Math and Luck.  Dose insulin.
4.    Put the boys on the bus and hope they don’t crash before they get to school. (Fortunately this has never happened on the way to school.  *knock on wood*)
5.    While they’re at school, Daddy goes to work, and Mommy does any multitude of things:  Go to the gym (and wonder how their sugar is); Go to the store (and consider Diabetes on every aisle); Pay Bills; Go to the Pharmacy (to pick up Diabetes medications and supplies); Make calls; Run Errands; Work on fundraising for our JDRF Team; Sleep for the night shift I’ll work that night.
6.    At 2:55, the boys are released from school, and I impatiently watch the clock until they get home.  I hope they don’t drop their sugar on the bus (they have provisions in their backpacks in case).  I won’t relax until they are safely back in my “nest”. 
7.    Wait, with baited breath, to get the coveted email from the school nurse.  It’s a mini-report card.  How’d we do dosing for breakfast?  How are our basal and bolus rates working while they are at school?  How was their Diabetes Day at School?  Jot all the numbers down on the clipboard, and try to make sense of it all.  *It’s an exercise in futility*
8.    Chores, Homework, Playtime.  Get dinner planned and prepared.  As I cook, I jot down the carb count of each serving of each item on the “menu” so I can keep a running tally while the boys eat.  Of note, since I’m now the Mathematician Waitress, I don’t eat until they’re done.
9.    Playtime.  Clean. Showers. Let them be “children” while I wrap my brain around it all.
10.  Bedtime blood sugar check and snack.  To dose or not to dose?  That is the question.
11.  Once the boys are in bed, that’s Mommy & Daddy time.  Time to decompress, be a husband and wife.  The length of this time is determined by fatigue level and the last glucose level.  See, Diabetes dictates when and how much sleep we can get. There’s no such thing as ‘going to bed early’ anymore without an alarm set to interrupt said sleep.  Murphy’s Law:  The more fatigued I am, the crappier the blood sugar will be…demanding I stay up even later or get up more frequently.
12.  At our bedtime, another sugar check.  Gear up with Spelunker light on head (*very sexy, I may add*).  Try to figure out which boy is which since they like to play switch-a-roo on us.  Insulin one, carb another.  Don't mix the two up! Plan the next time to get up to recheck depending on the readings.
13.  What?  Sleep all night?  Don’t make me laugh!  Get up heifer, and make sure your boys don’t need anything else….more insulin?  More carbs at 0200?  Drop back in bed, hopefully, for a very few more hours.
14.  0545.  Start all over again.

I wish they could see how our hands are now tied since our babysitting options are severely limited. I wish they could see how managing ONE diabetic is difficult, but managing TWO is formidable! I wish they could see how seriously I take every meal.  I wish they could see how much I worry.  I wish they could see how hard I try.  Surely if they could, I could get a “handicap” or bonus points on that A1C.

I’m glad they don’t see me cry (*wait, yes they have.  I fell apart 2 visits ago!*)  I’m glad they don’t see me get frustrated and angry.  I’m glad they don’t see the dark circles under my eyes and crazy hair at 0200.  Mostly, I’m glad most of them don’t have to live with this because it’s not something I’d wish on my worst enemy.

To know scientifically and medically “know” a condition, it’s very easy to advise.  It’s easy to make suggestions.  It’s easy to judge when you’ve never walked in someone else’s shoes.  I’m guilty of it myself when I give the SAME lecture EVERY shift about the importance of adequate WATER intake in pregnancy. 

Looking at the “glimpse” of our lives doesn’t tell the entire story.  It’s only a facet of who we are and what we do to keep our boys healthy, thriving and alive.  

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