To Have and
to Hold
Written By Robert Rummel-Hudson
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When you're totally dedicated to your child — a child who faces an uncertain future — it's easy to lose sight of each other.
Autumn 2003. Julie and I were in the car, taking a long, lazy drive through rural Connecticut. Schuyler (pronounced "Sky-ler"), then 3, was sleeping in the backseat, and we found ourselves discussing life before her diagnosis. It was a time neither of us had ever cared to revisit, and now that about two years had passed, we were both surprised that we were tiptoeing into that minefield.
As we talked, it became clear there was something Julie wanted to tell me. She was getting weepy and hesitant, and she wouldn't look at me directly. Finally, she began to cry. I sat there in that "helpless guy" mode you go into when a woman you love begins to cry and you just don't have a clue what's going on.
"I've been carrying something around with me for a couple years," she managed to say at last. "I didn't think I was ever going to tell you, but I feel terrible about it.I just need to tell you. I hope you'll forgive me."
She started sobbing, and it took a minute or two before she could continue. I waited, now fully terrified at what she had to tell me.
Finally she got it out. "Back when everything was so awful and you were so depressed, hell, when we were both so depressed, I ... I was having an affair with John."
She paused and let out a breath. "God, that sounds so stupid, like a TV movie."
She stifled more sobs and continued quietly. "We knew it was a mistake and we stopped after ... after I moved back in. We knew it was stupid. It's just things were so bad, you know? I just started talking to him a lot about everything and it just sort of happened. I'm so, so sorry, Rob. I don't know how to ask you to forgive me."
We drove in silence. When it comes to avoiding eye contact on a road trip, New England is very generous with the scenery. Julie and I were in a good place, better than we had been in a long time. I needed to choose my words very carefully.
"Please tell me what you're feeling," she asked, glancing over at me nervously.
I looked at her at last. "Would you be surprised if I said I feel relieved?
"I guess this is a good day for confessions ..."
Robert's Confession
I think the hardest part of having a child with special issues is the need for comfort. Julie and I could do anything, face any tough issue that came up, if only we could escape that world every now and then. Perhaps we all need to have someone on the outside to make that escape with, someone who's not there with us.
To complicate our feeling of helplessness, we had no definitive answer to face, no medical diagnosis stating "This is what's wrong with your child, and here's what you need to accomplish in order to fix it." There were only unanswered questions and frustrations, and when we looked at each other, I guess what we saw was someone who didn't feel one bit of sympathy for the other. I'm in the same boat, we seemed to say. Don't look to me for any answers.
I don't know how else to say it. We were sad, and we became disconnected.
It was a bad recipe. It really was, and we both knew it. When we were together, we spent all of our time and energy on Schuyler, making sure she was happy and trying desperately to find the key that would open up her locked mind and give her the voice we were both convinced was there but simply blocked somehow.
When we were apart, we were with our separate friends.
Madeline and I had worked together one summer in Michigan. It had been a few years since we'd spoken when I got an e-mail from her one January, telling me she was now living in Baltimore and working as an associate curator at an art museum. She was traveling with an exhibition that was coming to New Haven for a couple of days. She invited me, Julie, and Schuyler to come by the exhibit.
I found myself watching Madeline the entire evening. It occurred to me that given the chilly state between Julie and me, it was probably just as well that Madeline was leaving town the next day.
So naturally, the East Coast was hit by a blizzard.
Madeline called me that evening and said that she would be stuck in New Haven for at least another day. "I'm bored," she said. "Want to take me to a movie?"
You had better say no. Say no, say no, say no, good lord she's beautiful, say NO, you ass, say no, say noooo ...
"Absolutely. I'll come get you in an hour."
That's how it happened. That's how I found myself sitting beside this impossibly pretty woman in a darkened movie theater, how at some point I felt her press her shoulder against me and wondered if it meant what I thought it meant, how I turned to tell her something about the movie and was suddenly kissing her, how I found myself sitting in the car afterward, snow covering our windshield, listening to the shouting voice in my head, the one that could see the future and didn't like how it turned out, and how that voice faded until all that was left was the startling new reality of Madeline and the sense that I wasn't alone and I wasn't unloved and come what may, I was, for just one moment, more than a helpless observer to Schuyler's wordlessness and Julie's unhappiness. I may have been Asshole Husband, but I wasn't Tragedy Dad. Not at that moment.
The Ghost Father
I can't tell you why it happened. I can say that the more of a failure I felt as a father, the more I wanted to run away from that responsibility. I can also say that Julie and I were so preoccupied with the surprise turns our lives had taken that we weren't terribly saddened by how all our time together seemed to be about taking care of Schuyler rather than each other. I can even admit that I was a dog, if you like. Most of all, I can say all of that and still not get it entirely right.
There was something else, though, something I'd been running from for over a year now.
I was a failure to Schuyler.
What I realized later was that I'd been sinking into a pretty deep depression. I did see a therapist, at least, and though it didn't really change things, it felt like a step. When I could, I drove to Baltimore from New Haven and saw Madeline. After a few months and a few visits, it ended, and badly. As I left Baltimore for what turned out to be the last time and drove north in the dead of night, the voices I'd repressed for months started clamoring. Schuyler wasn't getting better. No one knew why. I was missing something. She needed a father who could help her, one who could see what was wrong and fix it like a father does.
I was convinced that if given a choice, Schuyler would be better off with a Ghost Father, whose imaginary attributes she could invent and build as needed through the years. Ghost Father would be infinitely preferable to Living Failure Dad, with all my faults and inadequacies there for the world to see. I don't know how to make sense of this to anyone else. It doesn't make sense to someone in a normal frame of mind. And yet to a depressed person, it makes all the sense in the world.
It made perfect sense to me as I drove across the Delaware Memorial Bridge at three o'clock in the morning and stopped at the top, 175 feet up from the water. It continued to make sense as I put on my hazard lights and stepped out of the car. I don't want to be overly dramatic. I stepped to the edge and peeked cautiously down into the darkness, not because I wanted to jump, but rather because I needed to know if I wanted to jump. I stood there, taking in the moment. I noticed the lack of sound, just the wind and the ticking of my hazards and the occasional creak from the bridge itself. Mostly, I thought of Schuyler. And whether she would really be better off with a phantom father or a failure of one. I don't think it was ever a question I didn't have the answer to. I just needed to look it in the face.
I got in my car and drove on, arriving in New Haven as dawn broke.
The Kid's Still Got to Eat
A few days later, Julie moved out.
Well, I'm no picnic. Living with me isn't easy, and my depression was seriously threatening to overwhelm me.
She decided to move out for a short while. And she decided to leave Schuyler with me. With every evaluation and every one of Schuyler's missed milestones, Julie was feeling the same sense of despair I was. When she finally needed a break, she had to step away from it all. In later years, Julie would explain the other reason she left our daughter with me. She felt instinctively I needed to focus on someone else and would be there for Schuyler. Simply put, I needed Schuyler and the unconditional love that she and she alone gave to me.
It seems strange to say it now, but Julie's decision to move out and leave Schuyler with me was a gift. I learned a very important thing: Even when you're depressed, your kid's still got to eat. She still needs to get her meals prepared and her clothes washed and her imaginary friends doted upon. And I gave her that, and everything else she needed. "You know what?" I said to Schuyler after a few nights alone as we sat on the floor eating grilled cheese sandwiches and watching a dinosaur movie. "This isn't so bad. We can do this, can't we?" She nodded matter-of-factly with just a moment's glance, engrossed in the prehistoric monster action on the screen.
In taking care of my little girl, I felt my feet touch the ground again.
Julie was supposed to take Schuyler for the whole weekend, but she brought Schuyler home Saturday night, and didn't leave.
I'd like to say there was a tearful scene full of epiphanies, but the truth was simpler. We had discovered in that one week that neither of us could live without Schuyler, and we didn't particularly want to try to live without each other, either.
Julie and I slowly reconnected. There was no romantic rededication, no stirring re-affirmation of our commitment, nothing but the quiet realization that we really could lose it all. Our sadness and our confusion had gotten the best of us, and we'd lost our way. We'd both stood on the bridge, it seemed, and we'd considered the possibilities that lay with self-destruction before stepping back and putting our feet to the road again.
Next page: Schuyler's Story
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
