He developed and regressed at the same time. As his face increasingly faded and seemed to grow remote, he finally learned how to sit, and even to stand up. At preschool age, he could almost walk. With great effort, he could force first one, then the other leg forward, take one step, two steps, three. But most of the time, he was falling. He fell and hurt himself and cried, then fell again. But I still thought I caught a glimpse of triumph in his eyes when he took his first steps on his own. It was a victory over a heavy, unyielding world, one I think he experienced consciously.
Actually, the first six, seven years with the boy werenât so difficult. When he was still a small child, I could keep him on my lap, rock him, and sing him songs. When he was sad, I could comfort him, at least part of the time, and the few words he learned were enough for us; they werethe important words in a world we shared. And for us, there was no other world.
As soon as we got to move home, what had been a despicable hospital transformed into a good and safe place. All our visits there comforted me, the checkups and the follow-ups, because in the hospital, people regarded my child as almost normal; they played with him and joked around, they even called him by his name. In some way, they created a context where I became a mother among mothers and he a child among children. Doctors, physical therapists, radiology staff, and nurses â they all related to the boy as if he was real, and they made it possible for me to feel the same way. He was a boy, a little boy. Sebastian. Yes, his name was Sebastian. I donât know why itâs so hard for me to think of his name; I always think about him as the boy. Perhaps names carry some kind of promise, and Iâd named him Sebastian in the maternity ward, when heâd just been born. This was before I knew anything about his illness, I lay gazing at his amazing little face and thought: Your name is Sebastian.
When he was around three years old, he spent the days in a special needs day-care center, because I had to go back to work. I found a part-time position in a museum and was completely content there even though what I really wanted to do was research and excavations. I was responsible for the museumâs collections, and if nothing else, it gave me the opportunity to use my organizational skills. The job was a healthy kind of normality, a kind of plaster, filling in all the cracks and holes in my life.
No one could predict what would happen with the boy when the time came, but around twelve, thirteen, he entered puberty. Suddenly, pimples covered his increasingly swollen nose, and the smell of sweat that surrounded him was acrid, like that of a feral animal. He also started growing rapidly. His feet, his hands, his whole body grew. I felt he wasgrowing away from me; it became very complicated to be his mother. I was quickly transformed into a hollow mother cocoon that had become too small and stayed on the floor with his toys. I felt insufficient, but I knew I had to keep going. He was completely helpless, and his dependency didnât decrease when he became sexually mature. Rather the opposite. Suddenly, powerful urges that his half-sleeping body would never be able to satisfy raged through his body with full force, yet out of his reach.
It happened so fast. One day, he was a head taller than I. But when he walked, I had to support him. Crutches and walkers were too complicated for his uncontrollable body. Sitting still so much of the time and taking so many medications had also made him bulky; he was incredibly heavy and I barely had the strength to hold him upright. He could pronounce about ten words that I understood, and he had a series of gestures and sounds Iâd learned to interpret. Sometimes he knew when he had to go to the bathroom, but most of the time, he didnât notice the signals his body gave him, didnât know what to do with them. It was as if a vast