On May 21, 1970, Will was born with clubfeet. His father, coaching me at Will’s birth and seeing Will’s deformed feet, left the hospital and did not return for 24 hours. No words about what he was seeing or feeling; nothing spoken about when he would be back. Had he taken in Will’s handsome round head with tufts of blonde hair, a hallmark of our now three children? Did he notice his soft blue eyes? He had longed for a son to share his world, but not this son.

By the time Bob returned, Will and I had survived a visit by my family. As each parent and brother held Will that first evening, I sat in the bed paralyzed and prayed they would not unwrap him to admire his perfect body. I did not want them to see the feet that looked like flippers; I could not have explained anything to them and I wanted them to see him as beautiful.

By the time Bob returned, I had also held our infant son in my arms as he screamed, outraged at having had casts put on both his legs, the first of three sets over three days. Thus the doctors began the treatment which would enable Will to walk. I remember thinking: “He will take a breath either voluntarily or by passing out. I just need to keep holding him.” I had read that somewhere about babies who scream so violently they do not breathe.

           Talking through Will’s disconsolate scream and through my tears and terror, as though this was something that happened every day, the pediatric orthopedist told me what it means for a child to be born with clubfeet and what our treatment options were. I do not remember what I told his father when he finally did return to the hospital the next night. Already this suffering child emotionally absorbed me as simultaneously Bob withdrew further from me, from Will and from our two daughters, Suzanne and Sara, then 3 and 5.

           Each day that first week, then every other day for months, I took him to the Alfred I. DuPont Pediatric Orthopedic Hospital to have his feet wrapped with tapes, gradually molding them into their proper position. Bob drove us there the first time. It was Memorial Day; the doctor met us at the side door because the clinic was not open and the corrections had to be continuous. He explained his controversial treatment of using tapes instead of casts to complete the correction process. He still bares the ghosts of scars from the edge of the special electric saw touching him as the last set of casts was removed, as Bob and I stood by helpless to comfort or spare him the ordeal. As Will’s parents we could be more involved because tapes would necessitate our exercising his feet several times a day to enhance the corrections and his flexibility. Often after a set of new tapes was applied, I nursed Will in a curtained off area, trying to give him solace as once again he experienced the pain of his feet being forced into a new shape. How could he know this was the only way he would be able to walk almost normally?

Vividly and achingly, I remember the first time I took him home from the clinic and began to exercise his feet as we had been instructed. Knowing I would be inflicting more pain, I decided to offer him a distraction. I laid him on the floor and turned on the television. At first his eyes looked around in the fuzzy way infants seem to do, apparently aware of the television images and my face. Then suddenly he shifted, staring off into space as though dissociating from the pain I was inflicting, pain that echoed the more severe pain of the casts being applied and removed.

What impact does this kind of trauma have on a child’s ability to experience his own feelings? To relate intimately with others? I remember the day his pediatrician left the examining room and paced the hall, finally coming back in and telling me he wanted a pediatric neurologist to see Will. He was almost two and not walking or talking yet. So hard to connect with him. To know he will always experience the world in ways I can only imagine, and that he cannot imagine the way I understand the world-or him.

            Sometimes I say I cried for the first 20 years of Will’s life. I cried when I watch his sturdy, slim eight year old body at play. He would ride astride his Tonka Winnebago camper in his elaborate make-believe world created by a multitude of paths traversing the woods next to the rectory. I cried because this alert and engaged child was also held by a mind that betrayed him. I cried because his father could not accept his son’s disabilities and differences and moved across the country when I remarried. I cried because I longed for the support of someone who wanted Will to have a full life as desperately as I did.

The last time he was evaluated Will was graduating from high school and almost 20 years old. I was told, “It is a stretch but not much of a stretch to say he has characteristics of autism.” When I read the booklet summarizing autism’s outward signs, for the first time I recognized so many of his behaviors as a syndrome and experienced deep relief. At last he began to make sense to me as a whole person. Instead of thinking I might work with him through one behavior only to have another demand attention, I could accept that these behaviors went together-and might not change significantly. He would always perseverate; be prone to humming when he needed to concentrate by shutting out the world; not show feelings easily; not look me in the eye for more than seconds at a time; talk about his world incessantly, connecting only tangentially to mine; work through his emotions by retelling stories over and over again; let me hug him but only rarely return the hug.

And yet, with his two older sisters, Will, now 30, lowered his father’s ashes into the grave. When I turned to look at him as the brief service ended, he was standing by his grandfather’s grave, his grandmother’s name already engraved with her birth date. I saw his stoic face crumple and dissolve with tears-one tear, a daughter later tells me-running down his cheeks. I held him, feeling at once the man and the baby, and he embraced me, letting me hold him in his agony. His body shook silently as he allowed all of us to see his suffering.