As the mother of R., I find it difficult to speak about my experience raising a child with what people call "mild" disability. Not difficult because there is anything shameful about it—but because there is a natural reticence that draws us to keep our most intimate experiences to ourselves. I will try, all the same, to tell you what it has been like.
My daughter was born prematurely, weighing just over two pounds. After four months in the incubator, she finally came home to her father and me, and we threw a celebration. For several months afterward, there was joy. Despite everything, despite the slowness and the obstacles, my daughter grew the way all children grow. And then one Sunday evening came the crisis: a desperate rush to the hospital, hours of frozen waiting, and finally a doctor who came to tell us, "She made it."
But at what cost. She had to begin all over again—this time with difficulties that sometimes seemed impossible to overcome. She no longer learned the way other children do, spontaneously and naturally. Everything had to be taught. Everything came only after months and years of patient, repetitive work. Years of speaking to a child who did not seem to hear. Years of playing games she did not appear to follow. Years of placing objects in her hands that she regularly dropped. Holding her so she could sit upright. Helping her roll across the floor. Finally, coaxing her to walk.
I remember an endless series of towers made from those colored plastic cups. I would build them slowly, so slowly, my hand over hers, my fingers gently bending around hers so she could grasp each cup and place it on top of the one before. And floods of praise and encouragement.
And then there was her refusal to eat. She would only drink. So I gave her juice—liters and liters of orange juice—while pushing spoonfuls of pureed food past every cry of refusal.
It was during those endless days, I think, that our beautiful bond was forged—the bond between the two of us that exists even now, and that I pray will never break. For me it was, and remains, a commitment—the kind you cannot walk away from—a commitment to fight for her, since she could not fight alone. Sleepless nights spent wondering, "What can I do for her tomorrow?" I kept my mind occupied that way, refusing to think of anything beyond the next day, the next small step she might take.
Friends, unwilling to understand or accept—as we all too well know—children who are "different," drifted away, drawn to other interests. My life had become almost entirely about my daughter. So I built everything around her.
I have been very fortunate: my daughter made progress. Step by step. Doctors say she is a child to watch in moments of despair, because she proves what can be done when everyone works together.
Now my daughter is fifteen. The challenges are different now, and I am no longer so sure it is truly easier to be the mother of a child with "mild" disability. It is certainly less exhausting. It brings more of what people call satisfaction. But there is another, deeper pain: I think all mothers of adolescents with mild disabilities know this well. Their children face constant moments of discomfort and humiliation. They are always comparing themselves to others. They live with a confused sense of injustice, with suffering that is almost constant. And as they grow older, these sufferings become harder and harder to soothe with a mother's arms.
If I pause to reflect on these fifteen years together, I find them very full, perhaps even beautiful.
I am deeply convinced that my daughter has given me far, far more than I will ever be able to give to her. She has given meaning to my life, which was otherwise filled with disappointment—like everyone's life. I am happy and proud to be R.'s mother, and of course I would not trade her for anyone in the world.
That is how it is for me. But for her, the question is different. For her sake, I will rebel for the rest of my days. I will continue to cry out silently the one question no one can answer: "Why?" Until my last day on earth, I will cry out: "No!"
R.'s mother, 1979