Thursday, September 16, 2010

Butterfly Effect

Shifting my weight from side to side, I tried to provide some sensory input by slightly shaking the push chair.  We attempt to quell her need to rock back and forth before it begins. She has actually rocked so hard the front wheels have lifted off the ground.  The push chair is a medical looking stroller for bigger kids and adults.  When I glance at it, I hear a loud slow screech.  DIIISSABILITYYYYY.

I don’t like to use the chair, but I have to concede it sometimes.  While Addie is able to walk, she does not have the endurance for much more than short stints.  She has only made it around the block once in her life and that was with frequent rests.   The times when she does have a store of energy, it is depleted immediately by running - her version of running, that is.  She looks down at her feet, straight arms behind her, torso rigid, kicking her little feet out side to side as quickly as she can.  This often ends up in a fall or a crash into someone or something.  She is over 40lbs right now and though she is not tall, neither am I.  I can still lift her for short bouts, but carrying her from place to place is no longer possible. 

Added to that is the danger of crowds.  Without the chair I approach groups in public in terror, knowing she will bolt without a care towards whatever far off vision compels her.  No regard to obstacles, safety or lost proximity to mom.  I will admit here and now that I have lost her more than once.  Not for more than 4 or 5 harrowing minutes, but my mind and heart still feel those 2 instances as though they lasted a decade each.

On this last day before the start of the school year, we visited a nearby outdoor mall. This was not how I had hoped to spend the day, but with my husband out of town and a busy end of summer, this was the only time I had to finish their school shopping – a few critical items yet to be purchased.  The push chair was not optional on this trip.

After hitting a few stores, we waited outside a busy restaurant for our name to be called for a table.   It was a hot day with little shade from the sun.  The waiting area inside the restaurant was too packed to accommodate me, my daughters and Addie’s chair.  Outside, we huddled close to a wall to get as much of Addie out of the sun as possible.  Without speaking of it, Cate and I began our routine tag team distraction provisions for Addie.  We both know waiting is hard and frustrating for her.  She wants out of the chair; she rocks with force worthy of tipping it, in my estimation.  This rocking and the accompanying noise she makes is an absolute eyeball magnet at the very least.  Addie does not concern herself with staring and in the right mood, I can give the benefit of the doubt and use it as a teaching moment - give it a PR spin to benefit Addie.  But my 11 year old is very uncomfortable and sometimes upset when her sister’s differences become a side show in public places.

Between rocks, Cate sang Addie a song and played a signing game.  Addie squirmed and signed “out” intermittently, alternating with happy giggles at her sister's attention.  I eyed the door, waiting for our names to be called so we could finally sit down to lunch.   Addie hummed as she does at varying pitches and volumes while other waiting diners stared, mothers tsked their oogling children, preteens walked past twisting back for one more straight-faced look.  Cate dealt with her discomfort by ignoring the stares and focusing intensely on her sister. Rather than take my turn to distract Addie, I let Cate extend hers as it was serving a purpose for her.  I appreciated seeing her choose a way to cope and stay positive.

Something caught Cate’s eye and she abruptly turned to peer through the glass door of the restaurant. I could not see from my angle.   Hopeful, I assumed it was the waitress, menus tucked under her arm, come to get us.  As I craned to look in, I did not immediately notice when Cate deftly left her post to go grab the door handle.  She pulled and stood propping the door open.  She stood that way for a moment or two, no evidence I could see that anyone was coming or going.  Feeling the chair move again, I crouched near Addie to commence with my distraction campaign.  Glancing back, I still tried to understand what Cate had planned.  Just then I saw a woman’s hand gently cup the top of Cate’s head – brief and light - very mother-ish gesture.  Trying to deduce who this hand might belong to, who this acquaintance of Cate’s might be, my line of vision got snagged and pulled down to the bottom of the doorway by a wheel. 

A familiar wheel.  An unfamiliar hand on my daughter’s head.

I straightened back up as the respective owners of each finally came through the door Cate held open.  I did not recognize either of them, but I did recognize the push chair.  It was the same as Addie’s, only bigger.  The owner of the hand spoke to Cate in the low serene tones of a steady encouraging teacher faced with a student who has just surpassed expectations.  “…Well, thank you.  You are so kind to come out of your way to help.  Most people – adults even - would not do that, you know…”

Our eyes met simultaneously, neither of us had to glance down to acknowledge the link between us. She turned back to Cate and continued addressing her.  She added another motherly gesture with a single brush to the angle of Cate’s chin with her forefinger and thumb as she spoke with increased confident calm, “Oh.  You get it.  You get it. I see."  Her previously controlled mild smile grew less mild, less controlled.

The woman and her son came all the way through the door and we faced each other, allowing the silences that aren’t usually indulged between chatting strangers.  Her son was tall, I could tell that even in his chair.  I guessed he was about 20 years old, but later found out I was off by 2 years.  He just turned 18.  He did not look in our direction, but smiled and waved when we introduced ourselves.  Addie barely noticed this entire exchange.  This one would not be about optimizing a social opportunity for our kids.

The mother and I shook hands but took little note of each other’s names, that detail rendered unimportant in the context.  We got right into it immediately, recognizing the rare opportunity, setting aside the conventional niceties that generally precede more intimate conversation.  She told me about her son and I told her about my children.  We talked about push chairs and 5-point buckles.  We talked about Addie’s communication device and her diagnosis of Rubinstein-Taybi Syndrome.   The woman regarded Cate as part of this conversation in the same way she might have if my husband were standing there.  She recognized and gave Cate credit for the expanded role as sibling, a role that Cate chooses to execute with grace and creativity. 

Without specific words, this other mother and I gave each other credit for being hopeful parents, for being parents who lovingly abide all the expected duties of motherhood while accepting the additional duty and accountability that comes with being exceptional parents, for being parents who lug push chairs out to wait outside busy restaurants, parents who lift heavy children, parents who sit through complicated IEPs unwilling to veer of the path of their vision of a productive and meaningful future for their child, parents who endure stares from others, who recognize and take advantage of chances to teach others to see our children and others with differences more clearly, parents who love their children – all of them, who are proud of their children, all of them.  Looking at each other, we saw defenders, champions, victors.

I do not remember her name.   But I remember in this brief exchange seeing clearly her strength, her positivity, her activism, her pride, her fierceness, her gratitude, her confidence, her power, her humility, her resilience, her willingness to take risks, her determination to wring good out of every situation.  

Seeing these things in her empowered me to look for these – and find them – in myself.

I meet such women from time to time and I walk away with more conviction, power and energy.  I walk away more eager to spend this conviction, power and energy on what is important to me and my family.  You hopeful parents out there are so very critical to my every single day.  Critical to my children, to the people I meet, to the conversations I have, to the projects I undertake, to the perspectives on differences in my community, to the perspectives and people around those people, and ever outward from there.