icon-no-judgement

Where There’s a Will…

special needs girl

She had done it a thousand times before. When Emma was younger, she would carefully and slowly roll her body down the two steps of our sunken living room.

But as she got older, she evolved into scooting down on her bottom with some semblance of graded control. It was a sight to see. Her four-foot, seventy-five pound frame propelled itself by pushing off the floor with the back of her hands while simultaneously pumping her legs, much like a caterpillar. She never took to the hand splints that were custom-made for her when she was little to keep her wrists straight and to prevent the contractions that partly defined her life.

Even as a small child, she was not going to be restrained. She somehow always managed to remove the limiting splints—using her teeth to pull apart the velcro. Survival was the name of the game for Emma, from the day she was born. She would find a way to overcome every obstacle that presented itself.

I marveled at her determination to get to where she wanted to go. She would lower her diapered tush, first one step and then the other, bouncing and closing her eyes in anticipation of the not-so-soft landing.

I would spot her from the corner of my eye as she would rhythmically make her way to the couch where I would be sitting, attempting to go unnoticed as I would to try sneak in another episode of the Housewives of NY, or Orange County, or Beverly Hills or Atlanta—my one guilty pleasure.

Catching me in the act, Emma would pause at my feet, reach for the remote control sitting next to me and place it matter of factly into my hand. Without skipping a beat, she would turn her head to look at the television in expectation. Even though I knew how this story ended, I would make an unenthusiastic effort at redirecting her from her goal by placing the remote control behind my back.

This was why she learned to pull herself up on the couch. She planted her forearms and elbows into the cushion of the couch, and with nothing less than sheer superhuman strength, would throw her body up, while pivoting it 180 degrees, so that she could land with aplomb next to me. She reached for the remote control behind my back, retrieved it, and triumphantly placed it in my hand so that I could comply with her wordless command: To change the channel to Sesame Street.

It was an impressive battle of wills, one that I invariably lost—secretly happy that I did.

Diana Kupershmit is a social worker, photographer and mother (though not in that order). This essay is an excerpt from a memoir she’s working on about raising her special-needs daughter.

Leave a Comment

Comments (3)

  1. inga barsky

    diana-
    if i am the first to comment, then it is fatefully so.
    it is difficult to comment on this entry, not because it lacks anything, but because it has everything.
    you have written with grace, strength, and i sense, in the direction of healing.
    may you be healed through your writing, and through your ability to see bring out the beauty that already exists in this world. you do it though your photos, your writing, and undeniably, through your daughter…

    wishing you continued growth and inspiration…
    inga

    Reply
    • diana kupershmit

      Inga thank you so much for the lovely words. nice. to see a familiar person on here!

  2. Fyodor kupershmit

    I spend time with Emma, and I love her the same way she love me. You can’t measures our love, because there is no scale for yet made. She can’t talk but she can ask for thighs in other ways. A beautiful girl.

    Reply