awareness, and most importantly, of sight. I waited three weeks, then four. At six weeks he began to smile, but I was anxious for him to smile and to gaze at me. “Sometimes it takes until three months,” my mother assured me when after two months Eli still wasn’t focusing. But I knew something was wrong. I took him for his regular well-check visit at two and a half months, and Nurse Linda spent a long time slowly passing a paper in front of Eli’s face. I hovered nearby, hoping to be assured, but certain my concern was about to be validated. Eventually, Linda put the paper down. She clapped her hands, loudly and sharply. My baby jumped. “Well.” Linda laughed uncomfortably. “He can definitely hear.” I smiled, but my insides twisted painfully. Then Linda looked at me intensely. “I’m not a doctor; I can only advise you. You need to follow up on this. Take him to a pediatric eye doctor as soon as you can.” She tapped her nails on the wooden desk. “He doesn’t need to focus at two months, but he should definitely be following a paper with his eyes.” During supper that evening, my husband and I desperately swung the small bear and monkey hanging on Eli’s baby chair in front of his eyes. Our baby smiled and gurgled, but looked everywhere except toward our dancing creatures. To us it was clear: He couldn’t see. AT THE specialist’s office, we waited and waited and waited some more. I spent the time observing the other patients playing with the wide variety of toys in the waiting room. Most had glasses. I secretly decided which colors and styles I liked the most. Finally we were called into a room where we met with the doctor’s assistant. “What brings you here?” she asked. I briefly explained that although Eli gazed at light, he couldn’t focus or seem to be able to see anything else at all. The optician picked up Eli and held him with outstretched arms, cooing to him. Then she observed him while Eli sat on my lap and asked us a few more questions. Finally, she took a pad of paper and scrawled a few words. I noticed, among others, “nystagmus” and “albinism.” When I had spoken to my regular pediatrician, he had mentioned the possibility of nystagmus, though I didn’t know anything about the condition. I had also
heard of albinism, but I was sure that the condition involved extremely pale hair and skin. What on earth could that have to do with my son’s eyes? The assistant called in the eye doctor and spoke to her briefly. Listening, Dr. Miller nodded rapidly. “Let me take a look through the slit-lamp machine. Then we’ll know for sure.” We were ushered into the second office. Eli was not impressed with the examination, declaring in piercing shrieks that he did not appreciate having his head held at such a tight and awkward angle. Dr. Miller worked quickly, evidently pleased with what she was seeing. She squeezed drops into Eli’s eyes and told us we’d be called back about twenty minutes later. “But what’s the problem with him?” I couldn’t help blurt out. “Can he see anything at all?” The doctor smiled. “I’m 95 percent sure of my diagnosis, but I want to be 100 percent clear of the whole picture and see his eyes after they’ve been dilated before I tell you.” The waiting room was packed, and while we waited, Eli finally fell asleep. Please let him be able to see, I prayed silently. Finally, our name was called. Back in the exam room, Dr. Miller looked briefly into Eli’s eyes and then sat comfortably into her chair, ready, it seemed, to give a lecture. “It seems your son has what is called albinism,” she informed us. “Albinism?” I asked doubtfully. “Yes, albinism. Most people have heard of it — the condition means partial or complete loss of pigmentation, which causes very pale skin and light eyes. But there’s another aspect most people don’t know about.” I love science, and for the rest of the appointment almost forgot that she was referring to my sweet baby son. “This lack of pigmentation,” continued the doctor, “can affect the eyes in multiple ways, though how much the eyes and vision of individuals with albinism are affected can vary significantly.” We were quiet, absorbing the information. “He has nystagmus, a normal outcome of albinism, and that is why his eyes float from side to side and can’t focus well.” Dr. Miller paused. My husband and I stared. “But,” she continued, “There’s good news.” I shifted Eli in my arms.
August 1, 2018 / THE MONSEY VIEW / 111 www.themonseyview.com / 845.600.8484