To Have and
to Hold
Written By Robert Rummel-Hudson
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Meanwhile, Schuyler's story:
Spring 2001. Schuyler is 16 months old.
I had a great idea for a Mother's Day gift for Julie. Schuyler and I were going to give her something special, something perfect.
"Mama."
Schuyler should have been talking, or at least trying, but we weren't really aware of that then. Well, I think we knew deep down it was time, otherwise I wouldn't have made such a big deal out of it for Mother's Day.
"Mama. Mama. Mama!" I repeated over and over, for weeks. Every single time she'd look at me with a big smile and say nothing at all. I have no idea what I eventually gave Julie for Mother's Day that year. But it wasn't "Mama."
Summer 2001. Schuyler is 18 months old.
"So tell me, Mum and Dad," Dr. Simon, our pediatrician, said; that's how she always addressed us. "Does Schuyler have any words? Is she saying anything?"
"Um, no, not really," I said. "Should she be?"
"Does she ever babble? Like she's trying to put sounds together into words?"
"No, she doesn't," Julie said, her voice lowering ever so slightly. I could see the warning lights on the dashboard of her mind starting to blink.
"Does she ever try to imitate your speech?"
"Not verbally, no," I said. "Just gestures."
Dr. Simon looked down from her notes to watch Schuyler for a moment, and then back up to us: "Has she shown any progress toward speech at all?"
I've said harder things since then, but this was the first, and it's the one that stayed with me.
"No," I said. "No, she hasn't."
August 2003. Schuyler is 3 1/2 .
When we saw Dr. Ment (a pediatric neurologist) standing in front of the light board displaying Schuyler's MRI scans, I watched her face carefully. It bothered me that she didn't make eye contact. At our feet, Schuyler played with one of the dolls in the doctor's office.
"Schuyler suffers from a brain malformation known as polymicrogyria," began Dr. Ment, apparently deciding that the best approach was simply to lay it out for us. "Her particular form is called Congenital Bilateral Perisylvian Syndrome. 'Congenital' means Schuyler has had this malformation since before she was born. The good news about that is, it isn't going to get any worse. The brain she has now is the one she's always going to have. The bad news is, it's never going to get any better, either."
Fall 2003. Schuyler is 3 1/2.
Schuyler would probably never speak. Never. Not long after the news, we were at the mall, and I saw another little girl who was different. When Schuyler saw me looking sadly at the girl, she silently took my hand and gently kissed the back of it. She was the one with the monster in her head, but she was the one teaching me how to make my way in this new world.
January 2005. Schuyler is 5.
We finally meet with Dr. William Dobyns, the country's foremost expert on Schuyler's condition. "I suspect she'll end up in the 'slow learner' range, or possibly the mild retardation range," he said.
We, of course, heard one word loud and clear — the "R" word. "You need to be ready for the possibility that she's going to be under your care for the rest of her life."
Spring 2005. Schuyler is 5.
When I peeked in the classroom window, I saw Schuyler looking at the door, clearly waiting anxiously for me. This was a change from her usual desire to stay in school with her friends as long as possible before being forced to leave with smelly old uncool Daddy. When she spied me, she ran over excitedly. I saw she was wearing a strange device around her waist like a jogger's purse. It had three large buttons on the top that Schuyler could easily reach down and hit: a green one, a red one, and one with a face. She grabbed at my arm to make sure I was watching and pushed the face button.
"Hi, my name is Schuyler."
"What?" I said. Schuyler's face burst into a broad smile and she pushed the button again. A young woman's voice repeated the phrase.
"Hi, my name is Schuyler."
"Schuyler!" I said. "Are you talking now?"
"Yes."
I wanted to see if she actually understood what she was saying. "Do you want to go home with Daddy now?"
She laughed. "No."
About the Author
Adapted from Schuyler's Monster: A Father's Journey with His Wordless Daughter, by Robert Rummel-Hudson. Copyright © 2008 by the author and reprinted by permission of St. Martin's Press.
Robert Rummel-Hudson is the coordinator of communications for the University of Texas at Arlington's School of Architecture and the writer of www.schuylersmonsterblog.com. He, Julie, and Schuyler live in Plano, Texas, where Schuyler goes to a mainstream class, as well as one for children who use alternative speech devices.
Plus: Get an update on how Robert, Julie, and Schuyler are doing now
