Friday, March 21, 2014

A Day in the Life - (Repost for World Down Syndrome Day)


Down syndrome.

Oh, those two little words, so simple, so innocuous when phrased alone, as individual entities living on separate orbits within my brain, within my conscious or subconscious thought.

Oh, those two little words, so powerful, so fraught with fear and prejudice, so terrible, able to make a grown man cry, able to change the lives of entire families in just the blink of an eye, with the mere utterance of them side-by-side, starting with a capital, ending with a period, together, linked, inseparable.


I knew them before I heard them, but I had no idea what they meant.

I knew the power they evoked at a time when joy and excitement were abruptly and unexpectedly replaced by sorrow, terror, and fear of the unknown.

I clung to images of hope found in pamphlets and on blogs when, in my mind, I saw only a bleak hopelessness, nothingness, a non-child.

And, gradually, I learned.  I discovered.  I began to embrace a future that I was finding would exist in ways I never imagined possible.

What is a day in our lives like, with Samantha, born nearly 8 years ago with a diagnosis of Down syndrome?

I can't speak for Samantha, and will let her do that herself one day.  But I can tell you that a day in our lives is nothing like I ever thought it could be, once those fatefully inextricable words wove themselves into our world.

I will start with what our days are not.

Our days are not sorrow and pain, a forever-child grasping blindly at my sleeve or the hem of my skirt, stumbling along.  Our days are not platitudes and I'm sorry's, the pained smiles of those that would humor you, betrayed by the pure pity so obvious behind their eyes.  Our days are not a disinterested creature tagging two paces behind me, unaware, without friends, without education, without socialization, unable to be a functioning member of society.


::We wake.  She eats her breakfast and gets ready for school, getting dressed, using the toilet, brushing her teeth, washing her face, being silly like most 7 year olds, watching TV and working the remote like a pro to find what she wants on the DVR or On-Demand.  She tries to sneak in a few books to read before I yell for her to hurry up and get downstairs to get her shoes on.  She tells me to relax, she's on her way.  We go to school, where I leave her in the entryway and watch her head down the hall to her 2nd grade class, stopping to chat with each teacher and child along the way.  She gets home, bubbling with excitement to tell about her day and get started on her homework.::

::The everyday with Down syndrome is trips to the library for a new haul of 20 books, playdates with friends, leaning out of the open back window to greet and converse with the people in the car next to us at a stop light, bedtime stories, ice cream parlors, travel to both foreign lands and domestic destinations, answering the phone, piggy back rides, nail polish and setting the table, writing love notes to Mommy and Daddy on notebook paper, to name but a few.::

::Our days are filled with I love you's and kisses, with laughter and an insatiably devilish sense of humor.  With spontaneous hugs, knock knock jokes and questions.  With hide and seek, playing doctor and cell phone apps.::


::Our world has changed.  In the most amazing ways.  We have joined a club we never knew we wanted to join, have met incredible people from all walks of life who share something with us, have learned more than we ever thought we'd learn, have discovered a cause and a calling in the form of a little girl who has made us into accidental advocates.::

::Every day is sharing, celebrating, reaching out to others, bragging, feeling a part of something so much bigger than ourselves, feeling so, so fortunate for this new and different and fulfilling life we've been handed.::

Our eyes have been opened.

Life is good.

Life is better than good.

We are complete.

Happy World Down Syndrome Day! 

1 comment:

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