Monday, February 24, 2014

Reflections

This is one of the most beautiful things I have ever seen:

Sisters Dance in Wheelchairs

The first time I watched it I didn't catch the lyrics until the very end.  Then I  realized the significance of the mirror and it took my breath away.  I thought of my little girls and my heart broke for them.  I often think of how challenging it must be for Cali, Lexi and Sophi.  I frequently try to put myself in their shoes.  I try to imagine how difficult it must be to navigate the challenges of childhood and teenage life with their disabilities added to the general craziness of peer pressure and school work and trying to fit in.

Then I watched it a second time and completely broke down, my body racked with sobs.  This time I went somewhere I don't go as often.  Elli's communication is so limited that I often become almost ambivalent to how difficult it must be for her to be trapped in such a difficult position.  I too often assume that she doesn't understand anything and therefore doesn't care.  While Cali, Lexi and Sophi obviously have challenges to face, they can all successfully communicate with those around them.  They can all understand love and happiness and concern from their family and friends.  Sweet Elli can't communicate much at all and I honestly have no idea how much she can understand what goes on around her.  But I KNOW it's more than I usually give her credit for.

It's so easy to just grit my teeth and endure it when she screams or lashes out physically.  I've learned to use "tune her out" as my primary strategy for keeping my sanity when she explodes.  But as I watched this video for second time today I thought of my sweet Elli.  Trapped inside a body that clearly does not reflect who she is inside, I could hardly bear it.  I clung to Christi as I wept, "I want to see Elli."  Oh, how I want to see Elli.

Because I am human I know that it will be difficult for me keep this perspective all the time.  When there is homework to be done, dishes to be washed, something dropped and broken and shattered all over the floor; when there are kids to be dropped off, kids to be picked up, work deadlines to meet; when there are eight needy children bombarding me with questions and demands and complaints and successes; when on top of all this Elli starts screaming at the top of her lungs and thrashing around as I try to change a diaper that has leaked all down her legs, I am sure that I will recede again into the "tune-her-out-and-endure-it" strategy.  But I am grateful for this experience today.  It is not the first nor will it be the last that reminds me that the real Elli is in there.  And someday her reflection will truly be who she is inside.  Someday I will meet her.  Someday I will hug her.  Someday I will tell how much I love her and she will understand.  And she will answer back.  Someday.

-Jeremy