Monday, May 12, 2014

Stolen Nights

Diabetes sucks much of the the time but it particularly sucks in the middle of the night. Last night alone, it interrupted my sleep 3 times. Once for a high, once for a low (different kid), and the third time to do a set change because the high wouldn't come down.  Oh, how I long to sleep through a night.  However, even when diabetes doesn't officially wake me up, I still don't sleep.  Somewhere around 3 am, I always seem to wake up feeling unsettled.  I toss and turn to no avail and finally, get up and take a trip through the house.  Once I am assured all babies are breathing and appear to be in a solid state of slumber, I attempt to return to my own sleep.  Sometimes it works, sometimes it doesn't.  I have a hard time shutting my brain off.  The 'I wishes' and the 'what ifs' and the "to do' lists keep knocking around and growing and tangling like the branches of dogwood trees.  Some thoughts are related to work, some are related to normal family things like money and time and why I can't keep the house clean for 5 minutes but usually, it's diabetes.

Diabetes consumes our time.  Just this morning, I received a call from a crying child attempting to get her blood draw at the lab.  They are changing the computer system at the hospital and they were missing information and orders.  She spent over an hour there, only to leave having nothing done.  I called to confirm if she even had an appointment.  She does.  So before noon, diabetes has taken up over 2 hours of her time and that doesn't include the minutes it took her to check her blood sugar and bolus for her carbs.  I am angry that those 120 minutes could not be used for normal 16 year old worries- like where she will meet her friends for lunch and what to study for the chemistry final.   Factor in the amount of time we have spent on the phone scheduling appointments, in the waiting room waiting for appointments, in line at the pharmacy and well, that's a lot of time!

Diabetes consumes our space.  Test strips litter the floors, in cars, in cupboards, in purses and bags.  This morning I found a canula for a pump in my computer bag.  Literally half of my bathroom linen closet is full of D supplies as well as a kitchen cabinet.  I may be a bit of a hoarder, but well, diabetes is unpredictable. Diabetes also fills one entire drawer in TJ's dresser- yep, D t-shirts from camps and walks are outnumbered only by shirts representing his favorite hockey players.

Diabetes consumes our emotions.  There is not a minute that goes by when it doesn't cross my mind, when it doesn't effect my child's day to day life.  The amount of time I spend thinking about it can't even compare to theirs- living with it each day.  Two of them always attached to something- the only break when they take a shower.  The other gives herself shots from 5-10 times a day.  I don't think anyone could understand the frustration of a child who has just done a set change- essentially given themselves a shot- only to have it fall out a minute later and have to do it all over again.  Or disappointment of  a blood sugar so low, he can't play the game.  Or the pain of a blood sugar so high she can't stop crying and her head is pounding and no amount of insulin and fluids seems to want to make it better.

But, then there is that moment in the middle of the night  that I say a bit of thanks.  Last week, someone's precious baby did not wake up.  Her blood sugar went so low in her sleep, she could not recover.  This morning instead of cursing the mess of cereal and empty juice boxes on the counter, I said a silent thank you for waking her up.  I have 4 incredibly amazing children, 3 of whom live each day with a challenge no one else can see.  Everyday, that challenge worries me, angers me, frustrates me, and every night it steals my sleep. They did not ask for it, they did not earn it, and they cannot give it away.  But, the key word is that they LIVE -with courage, compassion, and optimism.  People ask me how "I" do it.  In truth, I don't!  They do and because they do, I will not stop fighting for a cure, for awareness, for education.  I am an advocate for JDRF because they fight for my children so that someday, we may all sleep peacefully through the night.

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