Parenting a Child With a Disability

A powerful essay by Judith Scott, runner-up of the first Life Lessons essay contest.

  • Judith Scott
As her name is called in standard alphabetical order, the little girl careens haphazardly across the stage, blinking in the harsh auditorium lights. Her gait is uneven and her orthotics squeak, but nobody seems to notice or care. Her eyes dart behind the lenses of her glasses, and her hands flap in excitement. A teacher guides the child toward the principal, who holds the diplomas. The child’s blond hair falls over her face as she grasps the principal’s hand in the semblance of a shake. A hush falls over the crowd as the girl progresses to the stairs, feels for the first step, and carefully descends. Despite the earlier statement to hold all applause until the ceremony’s end, this group cannot hold back. The clapping is thunderous, a whistle here and there, an acknowledgement of the gargantuan effort not only today but on all days. A mother’s sniff and gulp, tears not quite held back, will be heard on the video later on. That mother is me.

Emily is perfect to us, but by no other standards does she meet that criteria. From the moment of her conception, extra genetic material on one of her chromosomes renders her a child with disabilities across the board. That isn’t information our family can process in one fell swoop, so we chip away, day by day. We try to assimilate the unexpected into our lives. Medical problems abound, most beyond our experience or ken. First Emily’s tied tongue, which precludes her nursing, followed by other physical anomalies―a heart that needs major repair at seven months, abdominal surgery, then kidney surgery. But the carving and crafting of a more serviceable little body cannot hide the truth. Some things, despite our sincerest hopes, our most heartfelt prayers, our howls in an empty room, have no cure at all. For these things, there is only a pervasive sadness, then after a very long while, an admiration that sneaks in to surprise us out of our grief.

Our daughter’s youngest years are characterized by early intervention; a phalanx of specialists form a team to help Emily be the best little girl she can be. From the get-go, she’s a tough client, struggling against physical therapy designed to make her muscles more pliant, railing against the occupational therapist’s attempts to calm her. Emily’s iron will is a challenge, but a godsend all the same. Strides are eventually made, and hopes lift. When she sits at 10 months (late), attempts to communicate at 2½ (very late), and finally walks independently at 3½ (extremely late), we celebrate with guarded optimism. Despite the grim prognosis and the lack of hard data given at the outset, we see progress, albeit glacial at best.

“Special education” is an abstraction we cannot grasp, a phrase, like “global warming,” we know is out there but that doesn’t fit into our world in any tangible way. But now fit it in we must. Beginning with a toddler preschool class, special ed becomes part of our parenting landscape. It’s a program I’m glad exists for the sake of my child, all the while wishing it away. Teachers, like the doctors who shepherded us through the early years, cleave to Emily with plans, goals, and love.

Emily at age 4 is a beautiful child and medically sound after years of specialists and procedures. We are out of the woods in many ways. Her hair, silken and white blond, coupled with full cheeks, calls to mind a cherub. But the stares have begun, the curious onlookers who try to reconcile Emily’s normal appearance with the subterranean deficits and delays. What lay hidden before under the relative sameness of all babies is now self-evident. The difference shows. My daughter will not let me linger on the pain caused by these stares, though, choosing instead to laugh with glee at the simplicity of a playground swing or a sandbox or a silly song. She is happiness itself, unaware. She teaches me.

Emily begins kindergarten, and the trappings are the same as with any child: the bus, the backpack, circle time. I visit her special classroom, a room adjacent to the “real” kindergarten, where my daughter has respite from the overly bright lights, the fast-moving students, the constant dialogue. The stimulation so necessary to development is oftentimes too much for Emily to bear. It’s a fine line to balance the movement and peace, so we all veer from one extreme to the other as best we can. My heart contracts with pride as Emily learns her letters and masters a voice-output device, her mode of communication. But my heart also contracts with pain as I see the other children swirling on the periphery, capable of so much and with such ease.
 
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.

Click here for an interview with Life Lessons contest winner Aldra Robinson, along with her essay, A Witness to Grace.