Monday, May 25, 2015

Eleven Years

Eleven years.  It's been eleven long years since our first diabetes diagnosis.  I couldn't even write yesterday.  (I've had a lot clogging up my thoughts lately.)  I don't even know what to say that hasn't already been said.

Eleven of her birthdays since then.  (Maybe 88 birthday parties for friends?)  Counting carbohydrates for cake, ice cream, snacks.  Guessing at the energy she'll expend running around, playing games, jumping on a trampoline, skating, swimming, playing laser tag or paintball.  Wondering if the stress of competition (or keeping diabetes a secret) will drive her up blood sugar.  Praying that if she takes her pump off to swim she doesn't forget to put it back on.  Praying it doesn't get lost or wet or dropped on the ground when she picks up the towel she wrapped it inside.
Eleven years of sleepovers and campouts, stressing over not getting a number last thing before she goes to bed, stressing when I don't get a number first thing in the morning.  Anxiety over not knowing everything she's hot dogs, chips, and the s'mores that don't fall on the ground.
Eleven years of school.  Preschool scares of lows on the playground.  First Grade Stickhorse Rodeo at the rodeo grounds-all the extra events (roping, bucking broncos, obstacle course..), being served (unmeasured!) fruit punch, dancing, and the hours in the hot sun!  Book Character Parades around the school on Halloween would drop her every year.  One year, she got a tray for Thanksgiving Dinner, her only tray lunch ever.  Recess and P.E. are always fun to figure out.  New pattern basal rates for the hours she exercises..we get this figured out by the first nine weeks.  And field trips..eleven years of trying to make every field trip..just in case.
Eleven years of checking every night between 12am-2am.  Because heck, we didn't need that sleep anyway.  And if she's low..another check.
Eleven years of pharmacies.  Ordering pump supplies, requesting new prescriptions, picking up orders, pharmacy deliveries when she's sick with ketones, coordinating refills when the dates are too close together (darn all those rechecks and strip errors!).  The months it took us to figure out how to use insulin pens instead of vials for more consistent numbers with each pump reservoir refill.  Making friends with the pharmacist so he can learn which meters we use the most, and fill our strip prescription for whichever strips we need the most since not all our meters are the same.
Eleven years of endocrinologists and doctors' visits.  Arkansas Children's Hospital, emergency rooms, visits for high numbers when we insist it must be a bacterial infection because we know.  High numbers tell stories.  Texting doctors in the afternoons, nurse calls in the night, after hours clinic visits.  Learning how many units of basal she should receive per kilo of body weight, every time she gains weight.  Raising bolus ratios almost every time we visit for their five ratios a day.
Eleven years of charting, recording, graphing, learning.  How much insulin did she use a day when she was two?  Four?  Seven?  Ten?  Twelve?  I can tell you all her basal rates, bolus and correction ratios.  Creating charts for recording that fit our life.  Creating notes for her lunches and blood sugar checks at school.  Changing the notes if her check times changed.
Eleven years making her life look normal.  Cute pump pouches to match her outfits, pump skins so she could wear Tinkerbell or jelly beans over it.  Finding cool purses with lots of zippers and pockets to hold her meter, lancets, strips, alcohol pads, and sugar tablets.  Allowing her to check her blood in her classroom, in the bathroom, nurses' offices, wherever she felt most comfortable.  Checking her out of school when she was too high to eat lunch or be at her school party.  Putting whatever we knew for sure she'd eat into her lunch box (nothing worse than getting insulin..then they don't want their lunch foods.)
And not to forget..Eleven years of checking her blood, ten and a half years changing pump sites, and a year and a half changing her constant glucose monitor sites.  Eleven years of forgetting her meter, leaving it at a restaurant, leaving it and forgetting where.  Leaving it at friends' houses.  Taking it, but not having any strips.  Or lancets.  Or batteries.  Forgetting to bolus for food.  Bolusing, but forgetting to eat.
Eleven years of food.  Sneaking it, hiding it, not counting it, counting it, craving it, finding non-carby foods for highs, high carb/low volume foods for lows.  We have a love-hate relationship with food and drinks at our house.
Eleven years of having other kids to care for, a life for the rest of the family, a marriage, a home, friends, and finding balance.  Diabetes has robbed a lot of time, energy, and carefree fun in eleven of her sweet thirteen years.  And ours.
It is never easy.  We are never done.  It never sleeps or takes always tags along with us.  We don't really like it, but it's one of us.  Happy Birthday, Diabetes.


Laddie said...

I've met in person, seen interviews of, and read blogposts by quite a number of people who have had diabetes for 50, 60, and even 70 years. Without fail they give credit to their mothers for keeping them healthy and making it possible for them to lead a long productive life with diabetes. That's not a club you asked to join, but I think some day your daughter will look back on a childhood filled with love, fun, and yes, diabetes and give credit to her mom for making it possible.

Morgan said...

A reminder that affects the entire family. It is a team effort to make the most of every day and not let D get the last laugh. Congratulations of 11 years of hard work Jones family. Keep fighting <3

Unknown said...

Shes such a cute kid! Youre doing great :)

The Ware's said...

Love you guys - sending hugs and prayers! Such a sweet girl! :)