Thursday, May 21, 2009

Child With a Disability Essay

I have so much to blog about but just can't get to it.  Writer's block...moodiness...laziness? Hmmm, maybe. Or maybe it's all just too hard to think about sometimes.  I love this essay.  It speaks volumes to/for me.  I'm looking for something to make a difference right me find some normal.

Child With a Disability

A powerful essay about parenting a child with a disability by Judith Scott, runner-up of the Life Lessons essay-contest.

by Judith Scott

Our lives, my husband’s and mine, fill with the role of parenting a child with disabilities. We become champions of the cause, joining groups, researching new developments, taking part as vocal advocates for our daughter’s rights. Sometimes this all feels fine and we soar with competence, proud of the manner in which we are managing. Sometimes it chafes, this role for which we did not volunteer, and we are quietly resentful, then guilty. My friends say they don’t know how I do it, my family say they are so proud, and I thrive on the accolades, smile a bit brighter. But behind that smile, a ghost lingers, and the loss of the perfect life I had planned sits heavy. 

Before Emily, there was a woman who was a teacher and a wife and a friend. Now there is just Emily, and the woman struggles for her bearings, tries to find her footing. I see this woman in the mirror one day and take a long moment to recognize myself. It is time to find the “new normal” that will define my life. I search for the thing that will make the difference. At first, it is running, the simple act of lacing up my Sauconys and hitting the road. Exercise helps and heals. Running segues into racing, and although not an athlete, I train and plan and accomplish modest goals. Local 10Ks and marathons expand my world, and I embrace it with unabashed selfishness. 

Running makes me brave, and although life with Emily is still turbulent, I have a renewed confidence. Another daughter comes along, followed by a son, born almost exactly 10 years after Emily. We cobble together a family, now not so much defined by the disability within it but by the love despite it. Emily’s siblings speed through typical development without a hitch, gladdening my soul and adding another layer of respect for my firstborn, who struggles so. The pain diminishes, and acceptance comes in. 

My husband and I always mock the fuss made over graduation celebrations. We wonder when graduating from elementary school became such an occasion. Surely no one put on the ritz for us, back in the day. But times change, as they will, and the day is upon us, as Emily nears completion of
fifth grade. This milestone day is marked by students all dressed up, speakers who wax nostalgic, and a video montage of the kids’ elementary-school years. 

I sit in my cushioned seat, only half-cognizant of the speakers’ words. I wonder how Emily is faring backstage with her class, lined up for the processional. Her full-time aide is there to assist her, but still I am anxious, twisting the program into a wad on my lap. Finally it is her turn to cross the stage, and cross it she does, with a nudge and whispered directions. From stem to stern, it is perhaps 100 feet, but Emily’s journey is more than that. The outgoing class stands to recognize her walk; they cheer, holler her name. 

Who knew that an elementary-school graduation, rife with its tired clichés and tacky streamers, would crystallize all those years of searching for peace? For now, in this moment, on this day, it is finally clear. I was mistaken. The albatross of disability in fact turns out to be a strand of uncultured pearls, each in its varied imperfection a pure and precious gift. No class I have taken, no country I have visited, no book I have read, has taught me more. This child who does not speak, who does not fit in, who is different wherever she goes, is a lesson to me.


AZ Chapman said...

love this poem

Jackie said...


I know your road is long but you are not alone. And looking down that road must lead to discouragement so many times... but looking down into Gracie's precious face must renew your strength. You are loved

Anonymous said...

Well, you made me cry I again. I cannot realize half of all that you do and feel. But, as Grace's Grandmother, my feelings run deep with the pain of how hard she has to work, however, the love of that wonderful child will keep my heart filled with joy as I marvel at her stength, will power, and gentle heart.

Anonymous said...

Thanks for sharing that. Very powerful. Barbara

Anonymous said...

Jacolyn, if you want to email me to talk, you can. :) I know you're busy, just letting you know that I'm here. Since we're both triplets with CP, I feel connected to Grace even though I don't know her in real life. She's an inspiration to me.