Friday, September 18, 2015

The Passengers

At 8:38pm (38 minutes post-bedtime, but who's counting ;)), our 6 year old Connor called down to us to inquire about something "he's been meaning to ask us."  Please know that Connor hits the pillow every night and falls asleep immediately.  So, while putting dishes away, I couldn't quite catch his question.  I asked my husband about it and he said annoyed, "he was asking if I've ever had the same dream over and over again, I told him to go back to bed."  I got ridiculously excited, because I've had the same question during my lifetime.

I ran to the bottom of the stairs and called to Connor to come out of his bedroom.  "Buddy (my name for him), are you having the same dream repeatedly, because that's happened to me before?"  "Well, Mom, yes, it happens a lot, but I keep having more of a nightmare over and over again."  The kid was about to go on an on about his nightmare and I was about to stop him......but, it was brilliant.  "Mom, I'm in our car and in the backseat, and somehow the car starts driving all by itself, and I don't know where I'm going AT ALL, and I can't see who is driving me.  I start panicking really badly because I can't undo my lap-belt down here (pointing to his waist), and I don't know what to do."  In my car, Connor cannot undo his lap-belt, it's difficult for me to undo most of the time, this detail has been incorporated into his dreams.  "I panic a lot Mom!"  I told Connor that if that nightmare happens again, HE will be in control, and in that dream, he can undo his lap-belt, and that he can climb into the driver seat and drive the car to a safe location.  "Okay, Mom!"  "Goodnight Buddy, get some great sleep!"

I stood at the bottom of stairs looking up at the empty stairway, thinking what an awesome metaphor his dream ("nightmare") was.  What a perfect moment that "Connor's nightmare" was presented to me.  It was as if a message was being subtly delivered to me.  Which is why I felt compelled to write this post. 

What has been happening for the greater part of a month now, is VERY high, inexplicable blood sugar levels, which finally caught up with me today.  I've been a mess since 11:24am this morning.  My husband and I know it's most likely a growth spurt (which, if you're not familiar with Type 1 Diabetes, will cause high blood sugar).  I've remained calm for the past month, lost countless nights of sleep, changed his insulin pump infusion set almost daily, tweaked his basal rates at nauseam (more Type 1 diabetes dorky talk), swapped insulin vials before the 28-day-expiration date, meticulously counted every carbohydrate that went into his tiny mouth, and today was the day that I hit rock bottom. 

I received a call from Connor's school nurse that his blood sugar was at 486 at 9:30am  (2 hours post meal, with 1 hour remaining on his meal bolus, he clearly would never reach the 200 blood sugar range, let alone the 100 range.)  I quickly grabbed all necessary materials, grabbed my daughter and headed off to his school for an insulin pump infusion-set change.  I changed his set in under 5 minutes and we made all necessary adjustments to his insulin on board.  Then, at 11:24am, I received an email from the nurse that Connor's blood sugar was at 354354354.  How the hell could it be at 354?  I began to panic, and called my husband.  I forwarded her email to him and said, "please deal with this, I can't do anymore, please call the nurse, I can't do THIS anymore!" Fighting back tears, I took my daughter on a lunch date to get my mind off what was going on.
I picked up Connor after school, who was in great spirits.  I asked about the remainder of his day...."it was good, but I couldn't do P.E. Mom, my blood sugar was still above 300."  The tears began to stream down my face.  P.E. isn't until 1:30pm, so, all I heard was that his blood sugar was in a high blood sugar range all day, and Connor LOVES P.E.  I tried to control my tears, which went into uncontrollable sobs once we arrived home and I got him out from his lap-belt.  I can't run Mom, and it hurts really bad just to walk.  Due to his infusion set being placed in his thigh  (I virtually have run out of room on his teeny-tiny body to place the infusion set, due to too much scar tissue), I was forced to insert the infusion set into his muscular thigh this morning.  Connor was supposed to have soccer practice tonight.  He can't run.  We are incredibly short on infusion sets, which are being delivered on Monday.  His CGM (continuous glucose monitor), also stopped working today, which needed replacing.  No P.E. today. No soccer practice.  There I was.  There he was.  All things were going incredibly wrong at the same time.  I cried ugly sobs for hours, until I finally called my husband around 5:00pm, because I just couldn't calm down.  I ran to my bedroom and kept telling my husband through cries how hard it is "to have absolutely no control!"  A phrase I must've repeated at least 20 times.  It's so incredibly defeating to keep trying your absolute-most-bestest-of-bestest, day after day, and receive a failing grade.  Although, honestly, I wish I was in a classroom and all that was being handed to me was a letter grade.  I have my child's life and health in my hands, and nothing but an "A+" am I willing to accept.  My husband, like always, calmed me down.  I wiped my face full of tears, headed downstairs, changed Connor's CGM, had him lay down for the remainder of the afternoon due to the thigh pain, and guess what, his blood sugars were absolutely beautiful.

I experienced sheer panic today.  I wasn't the driver of my car.  Hell, I don't know who the hell is driving my car.  I don't know my destination.  I don't know how bumpy my road will be.  I don't know how many traffic lights will stop me. I don't know how safe my journey will be.  It is MY reoccurring nightmare at times too.   

Buddy, life put us in the same damn car.  We are just a couple of passengers in a car that is being driven by someone we cannot see.  This individual will take us on a journey to an undisclosed location.  It could be horrible or it could be wonderful.  We could try tirelessly to get those lap-belts off and take over that driver's seat.  We could grab the steering wheel and without hesitation, apply the brakes and park our car.  Our parking space would be safe, yet uneventful and predictable; same views, sounds and scents.  With no new experiences, we'd consequently never have any emotion elicited contributing to a lack of growth.  Better yet, we could keep those lap-belts buckled and just sit back and enjoy the ride we are on.  We could take-in earth's scenery, from rolling hills to bustling cities; choose to roll down the windows, inhale deeply and take-in all the scents; we could blast the music and sing on the top of our lungs; and above all, enjoy the heck out of the company in the backseat of our car and allow that driver to take us where we need to go without questioning our destination.  Despite the traffic lights, bumps on the road, flat tires, heck, maybe even an accident or two, and with overwhelming uncertainty and lack of control of our journey, let's not panic.  We can do this, Connor, me and you, let's just be a couple of passengers and enjoy our ride together, bumps and all.

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