your life around. Perhaps from reading this book, another deaf couple will be blessed with adopting a deaf child someday.
The truth is, every child—deaf and hearing—should be blessed with a family as loving and as in tune as Zoe’s (including her three older hearing brothers), and as this book is passed on throughout our community, some three million strong, for generations to come, we’re sure that it will help that vision to manifest.
—T. ALAN HURWITZ AND VICKI T. HURWITZ,
President and First Lady, Gallaudet University
“. . . Zoe, the Greek word for life as God has it.”
—MAX LUCADO, 3:16: THE NUMBERS OF HOPE
ZOE SAT CROSS-LEGGED on the living room floor, her palms cupping her chin, her mouth agape. “Do it again, Daddy!” she said. “Do it again.” Tim’s hands flew as he painted a landscape of Santa with his sleigh and reindeer, zooming across the starlit sky, then landing on the roof and squeezing down the chimney. Snow was falling, and the moon was dark. With his hands and facial expressions, in American Sign Language (ASL), Tim was creating a magnificent vista, telling the story of the fat man getting stuck in the chimney . . . and Zoe was laughing.
It was 2006 and the Christmas I had always dreamed about having but thought might never happen. My eyes drank in my two-and-a-half-year-old daughter, my daughter, in a Christmas storybook scene, her sparkling eyes revealing her deep sense of peace and belonging. That afternoon was my own private miracle. Watching Zoe filled me with such joy, I could hardly contain it. For a second, I worried again that, just maybe, I loved her too much—and that my three sons felt that I loved them less. This is my cross. No matter how many times they tell me how much they feel my love, I can’t help feeling that way.
It has to do with the fact that Zoe, like me, is deaf.
Within my community, the Deaf community, my situation is somewhat rare because most deaf people have never also been hearing. It’s been a gift of sorts as it allows me to be with hearing people one minute and deaf people the next, and generally, to be at ease around hearing people. Because I could already speak before I became deaf, I do have some speech—what I call a “deaf voice.” At first, most people think that I sound funny, but after a short while, they are usually able to understand me. Because I lip-read, I never give a second thought to going into Starbucks and asking for a cup of coffee. I know what to expect: I’m going to ask for the coffee; they’re going to ask me if I want room for cream. I’ll say yes; they’ll tell me how much it costs. I’ll pay and then leave. I feel in control of the situation.
This ease with life was not easily won; however, it was inextricably linked to my desire for a daughter, something I’d been aware of ever since I was a little girl. When each of my three sons was born, each was my pride and joy. Yet their births just widened the hole that could only be filled by my having a daughter, for a reason I had yet to discover. As I look back on my life, with the gift of time and hindsight revealing everything, it was as if God had swooped down from above and said, “Here’s your deaf daughter. You, Brandi, of all people, deserve her.”
The first step of that journey began one fateful day in March of 1974.
THE BLINDING LIGHT is what I remember most. I wanted to put my hands over my eyes but was too weak to do so. It was 2:00 AM, and I was lying face up in the emergency room, more scared than I can say. I don’t remember much else before being electrocuted, or so it felt, but I do remember the doctor turning me over, pushing aside my hospital gown, and rubbing my lower back with alcohol. I can smell it now.
Then came the blow—a sharp prick sending excruciating shock waves up to my head and down to my toes. I let out a scream, which my mother, who was outside in the hallway, couldn’t bear to hear. I was only six years old. The doctor had given me a spinal tap, and there was nothing left for my mother to do except swallow her tears and wait for the results.
Thus began two weeks of hell for her and two weeks of drifting in and out of sleep—rather peacefully—for me. The days leading up to that night, when I was burning up with a fever, had been much worse for me. I remember reaching into the freezer for ice cubes to put on my forehead. It was March 1974; I was in kindergarten. We lived in Naperville, Illinois, a suburb of Chicago. My mother had already taken me to the doctor, who said that I had a bad flu but I would be okay. He was so wrong.
The day she took me to the hospital, I had been lying on the living room couch. My mother had come over and sat down next to me. “How’s my sweetie?” she asked. I shook my head. She kissed me on the forehead and then went into the kitchen to talk to my father. “Bill, call the babysitter to cancel,” she said. “We can’t go out tonight.” They had theater tickets for a show that was playing in Chicago. My mother came back to me and took me upstairs to my room. I must have fallen asleep because I remember waking up, hours later, and feeling like I was going to die. I called my mother. She came running into my room. “Mom, I don’t feel good,” I told her.
“Can you put your chin to your chest?”
“It hurts,” I told her, after trying. She couldn’t remember how she knew to ask that question, but remembered that if the answer was no, it was a very bad sign. I was wearing my favorite pink-and-white pajamas, and she picked me up, wrapped me in a blanket, and then took me to the hospital while my father stayed home with my brother, Bryan, who was a year and a half younger than me. The doctor who admitted me said that it looked like I had spinal meningitis, but that the spinal tap would confirm his diagnosis.
About an hour after my mother heard me scream, the doctor came into the waiting room to talk to her. “Mrs. Sculthorpe, please sit down.” My mother’s heart skipped a beat. “It is spinal meningitis—a very bad case. We’re doing everything we can, but you need to be prepared. We’re not sure if she’ll make it through the night.”
That’s when my mother turned to the doctor and said, “She will not die, doctor. She will not die.” Years later, those words would make me stronger.
They put me in isolation and gave my mother a gown and mask to put on before coming to my room. A profoundly spiritual woman, that night she felt betrayed by God. Where are you? she asked him silently. Why is this happening? Why are you letting this happen? She sat in my room and wept for hours, holding my hand.
The night passed. I didn’t die. Then the next passed. When it started to look as if I were going to live, the question then became what havoc the illness would wreak upon my body. Deafness, epilepsy, blindness, or any combination of the three were all possibilities, the doctors said. My parents were just relieved that I wasn’t going to die.
But the horror continued.
For fifteen days, I drifted in and out of sleep, the little veins in my arms collapsing from the IVs, so they had to put them between my toes and in my feet, with my mother still asking God, Why?
Finally,
