Until I Say Good-Bye

by Susan Spencer-Wendel

  I didn’t tell her how much I wanted this. To visit Kleinfeld’s. To watch my daughter walk out of the dressing room in white silk and see her, suddenly, ten years in the future, in the back room before her wedding, in a moment I will never share.

  No expectations, I told myself.

  Don’t make Marina’s life about you.

  In New York, I promised myself, we would do what came naturally. Marina would try on as many dresses as she wished, but only as many as she wished, even if that was none. I would not ask anything of her. I would not have expectations. I would not force my daughter to do anything she didn’t want to do.

  I realized long ago, when I was diagnosed, that I can’t force anything. Get your Zen on, Susan. What will be will be.

  We would not buy a dress. Some journalist wrote that later: that Marina and I were going to New York to buy a wedding dress.

  That writer: what a man! No woman in her right mind would buy a wedding dress at least a decade before her marriage. No mother would force that on her daughter. Fashions morph. Times change.

  I simply wanted to make a memory.

  I wanted to see my beautiful daughter on her wedding day. I wanted to glimpse the woman she will be.

  Maybe I would cry. Mothers cry, right? But I knew I would laugh, too. Because I would be with my Marina. I would be imagining her happy.

  That’s the memory I wanted to make.

  When my only daughter thinks of me on her wedding day, as I hope she will, I want her to think of my smile when I say to her at Kleinfeld’s, “You are beautiful, my child.”

  “You are so cute, Mom,” Marina said, bringing me back to the moment. “We can totally go to Kleinfeld’s.”

  She took a strand of hair that had come out of my ponytail and tucked it behind my ear. Something I could no longer do, even when the hair tickled my nose.

  She put her arm around me in a teenage almost-hug. I patted it with my curled fingers.

  One moment, perfect like that.

  She jumped up, that Marina smile on her face. “Can I have some money? Casey is going to get ice cream.”

  “Sure, honey,” I said. “Get my wallet out of my purse.”

  She did.

  “New York,” I said, smiling as she slipped $20 into her back pocket. “Bring me the change, please.”

  “Oh, Mom,” Marina said. “You are so cute.”

  And she was gone.

  Tattoos

  I don’t know how the subject of tattoos came up. Never had one. Never wanted one.

  But we were in the Chickee hut. Stephanie. John. A few friends. Marina.

  Things get said under the Chickee. Lots of things. It seems to have a diuretic effect: words just run out of people’s mouths.

  So I suppose it was a joke. We were going to Kleinfeld’s, a TLC show. Why not NYInk? A Brooklyn tattoo shop with its own show on TLC as well?

  Sheesh. For people who lived mostly without cable, we sure were influenced by television.

  “I’ll get one here,” I said, laughing.

  “Where, Mom? On your upper leg?”

  Arrgh. I could no longer bend down to point.

  “No, my ankle. It will say—” I stopped to get control of my tongue. I have to do that for big words. “ ‘Serendipity.’ ”

  “What’s that?” Marina asked.

  Serendipity. Good luck. An aptitude for making desirable discoveries by accident.

  The word I would use to describe my whole life.

  “Look it up,” I said.

  “Oh, Mom,” Marina said, rolling her eyes. “I don’t look things up. You know that.”

  Only your friend Casey doing his crazy butt-dance on YouTube, I thought. In a blond wig, no less.

  I didn’t think much of the conversation until a few days later, when Marina came up to my chair and sat down on the arm, like she often does. She took a strand of my hair and tucked it softly behind my ear. I love that.

  “I really want to get a tattoo in New York,” Marina said.

  Oh, brother. What have I done?

  “A blue cornflower on my ankle.”

  She smiled, but I could tell she was serious.

  “Why, sweetie?”

  “Because that’s the symbol of ALS.”

  I guess she does look things up. And knows.

  Of course she does. She’s a smart girl. I cannot shelter her. She knows my diagnosis. My future. That there is no cure. That the end is near.

  And she wants to keep me close. She wants me with her, forever under her skin.

  She almost got me. She really did.

  Until John, the voice of reason, said: “No tattoos, Susan. My gosh. She’s fourteen.”

  Support

  The Marriott Marquis is a huge hotel, right on Times Square. If there’s a place on earth that is the antithesis of Turtle Beach, I realized, with its sapphire waters and empty sand, it is Times Square.

  There are people everywhere, even in the road. No cars allowed here.

  The buildings tower overhead. Every store seems to have lights thirty feet high. The tower where they drop the New Year’s Eve ball is covered with a stack of electronic billboards. The police station sits right in the middle of the road.

  Did I mention the people dressed in full-body cartoon character suits, begging coins in exchange for photos with kids?

  The main entrance to the Marriott Marquis is through a short tunnel and across four rows of taxis. Inside, people wander in all manner of outfits, from saris to cowboy hats. There is a bank of elevators to the eighth-floor lobby, then a central atrium forty floors high.

  In the middle, the round glass elevators whisk people upward, again and again. The elevators look like pneumatic tubes. The kind Mom used to put checks in when she drove to the service window at the bank. Then I’d get a lollipop back.

  The kind of tubes in movies with old mailrooms.

  I loved it.

  I had not been to New York City since 1988, when I was an intern at the United Nations for a summer. I lived in a room without a bathroom at the Martha Washington, a women-only boarding house with rats as large as cats.

  I loved that summer. I worked hard at the UN. Walked the city. Became friends with interns from all over the world. I rode the subway with them to Queens and mysterious, far-out Brooklyn neighborhoods to eat their native cuisines.

  Now I was getting a different view of New York. Not just from two feet lower, because of my wheelchair, but from the view of a mother with a daughter gawking at every store.

  Not to mention Stephanie stumbling along beside us, still recovering after white-knuckling the entire three-hour flight from Florida.

  We’d added an extra day to the trip, at the request of my publisher. At first I was leery. I wanted this time to be about Marina. But a New York publisher was putting us up for the night and paying to change our plane tickets. As Marina would say: “What’s not to love!”

  So first stop was across town for an interview at the publisher.

  While I worked, Marina was taken on a quick tour by her “two gay dads,” my agent Peter and his friend. (An inside joke—they are both straight and married.) They went to the Plaza Hotel—“Wesley used to be OB-sessed with Eloise,” Marina told them—Central Park, and a Japanese department store called Uniqlo, which Marina found too weird for shopping.

  Then I had an interview with an editor from People magazine. Nicest woman ever.

  After, we tried to visit Serendipity, a famous ice cream shop. There are steep steps and no wheelchair access. I sat outside, enjoying the sun, writing, while Marina and Stephanie went inside. Someone came by and offered me a dollar.

  Marina and Stephanie brought me iced hot chocolate, the Serendipity special. I drank it outside in the sun. Perfect.

  Back at the hotel, I gave Marina my
credit card. She went shopping on Times Square. Yes, I let Marina shop alone in New York City. You can’t helicopter-parent. You have to trust your children and the world.

  Just the week before, Marina and her friend had been jumping off a bridge into our local lake. It was only ten feet high, but some parents wouldn’t let their children go.

  Who was I to say no? Hadn’t I jumped off bridges all my life? Yes, literally, when I was a teen. In fact, I jumped off the exact same bridge.

  But also when I went to Hungary. When I went to Colombia. When I married John on a whim. When I opened the letter from my birth mama.

  But what about the alligators? There are always alligators in Florida waterways, right? No, only the possibility of alligators, and you can’t quail at possibilities.

  John himself had gone in that same lake the year before, when Marina’s retainer had somehow flown out of her mouth and into the water while we were standing in Steph’s backyard. He and Marina dug around in the weedy water for half an hour, and if cautious John thinks the water is safe enough for the two of them to prowl, then how can I deny my daughter a little fun?

  (They found the retainer, by the way, buried in the weeds.)

  “Be careful with this card.” That’s all I told Marina before she skipped out the door. I wasn’t worried she’d get lost or spend too much or endanger herself.

  I wasn’t worried about pickpockets, either. My only worry was that her jeans were so snug, the pressure on her pocket would catapult the card right into the air.

  How oh how did skintight become such a fashion?

  She was back for the party that evening. It was a reception thrown by Peter in the rotating restaurant on the forty-somethingth floor of the Marriott Marquis. Folks from the publisher and from Peter’s agency. Charles Passy, the friend who blogged about me in the Wall Street Journal. David Smith, the lawyer who had shown Peter the article. Two movie people who wanted to make a film about my life.

  “They came all the way from Los Angeles to meet you,” Peter told me later, clearly impressed.

  I went to bed right after the party. When it takes you fifteen minutes, and all your strength, just to sit on the toilet, you tend to get tired.

  The last thing I remember was Marina standing at the window of our hotel room, looking at the Times Square lights.

  When I woke the next morning, everything seemed the same. The city truly had not slept. It just went on and on.

  We went with it. To breakfast. To more shopping for Marina.

  Pam and Kerri’s wedding was at noon at Rockefeller Center, so we decided to walk the eight blocks. Stephanie pushed me in my wheelchair.

  We arrived early enough to roll around the Rock. We gazed at the strangely muted brown skyscrapers. At the famous ice rink, now filled with tables for the summer. There were a hundred flags, at least, from around the world.

  And fifteen stairs, with no ramp. Stephanie helped me up, one step at a time, while Marina carried my wheelchair. By the time I reached the top, we were sweating in our wedding attire. Even me in my sleeveless black-and-white dress, the one Stephanie had helped me pick out a few weeks before.

  “Let’s go,” I said. “It’s time.”

  The wedding was at Top of the Rock, the observation deck. There was an actual red carpet on the sidewalk outside the door. The wedding guests clustered inside.

  The brides arrived. They kissed everyone. Handed out gifts. An efficient woman herded us into a special corridor, then around the tourist line to the elevator.

  The elevator was bedlam. Twenty-something people sucked upward so fast our ears popped. A video on the ceiling flashed rapidly moving images, with loud music.

  We arrived with a whoosh of hydraulic brakes. The music and images stopped. The other wedding guests started to file off.

  “Look,” Steph whispered, pointing up.

  There, on the ceiling of the elevator, was a ladybug. It had been hidden by the throbbing video.

  I thought of my nephew Charlie’s funeral, when the ladybugs landed on his coffin. Of summer days. Of the little gift on my nightstand back home.

  “That’s good luck,” Stephanie said. “That’s a blessing.”

  “There’s another one,” Marina said, as we stepped off.

  We were sixty-seven floors up in the middle of Manhattan, surrounded by ladybugs. A blessing.

  Stephanie pushed me out onto the viewing balcony. From that height, New York City looked like Legoland, the millions of people hidden away. We were on top of the world.

  I ask you now to set aside your opinion about same-sex marriage for these few minutes as you read. There was already a woman at the wedding—a relative of Pam’s—who advertised her disapproval.

  This is not about morals or the Bible. This is about Kerri, a friend for many years. An always-there-for-you type of person. Someone I saw struggle with relationships for years. A single mother who sacrificed for her children, who worked hard, but never found joy in her personal life.

  Until she met Pam.

  “This is it, Kerri,” I had told her. “This is the joy you have been waiting for. And you deserve it.”

  She cried. “I know,” she said, “and I almost gave up.”

  I wanted to be at the wedding for Marina. Because I won’t be there when Marina marries, but I want her to know that whomever she chooses—man or woman, black, red, purple, or brown—I support her. As long as that person makes her happy and treats her well, I support her.

  And I wanted to be there for Kerri.

  She had given me a gift in the lobby. Just like Kerri—a gift given, when one was meant to be received. While we waited for the brides, I opened it. It was a necklace etched with the word Serendipity. Kerri and Pam had adopted my word as their own.

  I put on the necklace, alongside the pendant of Saint Andreas that Soulla had give me in Cyprus. The one Panos had in his pocket the day he died.

  The brides walked out. Kerri’s ice-blue dress lit up her blue eyes. Pam, for the first time I had seen, was without her scientist spectacles, revealing her large, gorgeous brown eyes.

  I hoped they might glance past each other’s faces at the city below. The millions of people in all those Lego towers. A reminder of the extraordinary blessing—the serendipity—of finding the one person among millions who lights your soul.

  But Kerri and Pam already felt that.

  You could hear it in their words. See it in the joy on their faces.

  Feel it when the minister said, “I now pronounce you married,” and Pam said, barely, through her tears, “I never thought I’d hear those words.”

  Kleinfeld’s

  The story of our trip to Kleinfeld’s cannot be understood without further zooming into focus on this fourteen-year-old who is my daughter.

  Key word there: fourteen.

  On the plane to New York, Marina told me of a middle school band trip she had taken recently where a member of the band chewed up granola bars, spit them into a barf bag, and added orange juice for a true vomit effect. She thought that was hilarious.

  As we pulled up to our hotel on Times Square, Marina noticed one of her favorite clothing stores across the street. “Oh my gosh! It’s three stories!”

  Inside the hotel one eve, we boarded an elevator with pizza boxes. Another couple in the elevator also had pizza, and we chatted pizza with them.

  “Man, that was AWK-ward!” Marina said of the pizza chatter as we got off the elevator.

  This was the girl I took to the fancy store for wedding dresses.

  A child.

  An awkward, beautiful child.

  I’d arranged the visit with Kleinfeld’s months in advance: sweating the details, assuaging the management, convincing the store they should allow us to come in for a special fitting even though we were not buying a dress.

  As the trip approached
, I would ask Marina if she was excited. “Yeah,” she’d say in her high-pitched squeaky voice, the one she uses when she’s really not sure.

  “Sure, Mom,” she’d say, shrugging her shoulders.

  She still gushed about that tattoo parlor, though.

  Yes, Marina was more enthused about (almost) getting a blue cornflower on her ankle to represent her mom’s fight with ALS than trying on stinkin’ $10,000 wedding gowns.

  Awkward, beautiful, dear.

  Friday morning was our Kleinfeld’s visit. Stephanie and Marina arranged for a car service to take us the twenty-five blocks: an over-the-top handicapped van with a wheelchair lift, though I was able to get out of my wheelchair with assistance and transfer into a normal car.

  The electric gates and ramps opened. The driver wheeled me in and strapped me down like Hannibal Lecter, then closed everything up.

  “I feel like I’m taking you to the dog pound!” Steph said, cracking up.

  I laughed too.

  I knew if I started crying, I might never stop.

  On the ride, Marina kept turning and looking at me in the back of the van. “You okay, Mom?”

  “I am fine,” I said.

  At Kleinfeld’s, I was unloaded like a piece of cargo. We rolled across the bustling, dirty city sidewalk—with scaffolding overhead and the distinct smell of marijuana—and into a dream.

  Flower arrangements ten feet high. White grillwork on a Romeo-and-Juliet balcony. An ivory gown posed with a black tuxedo, a headless bride and groom.

  “Wow!” I said.

  I was wearing a new black outfit, one of four I had shopped for with Stephanie before the trip. Marina wore jean shorts, a sleeveless shirt, and sneakers. She stood with her hands crossed over her chest, looking like this was the last place on the planet she wanted to be.

  Even “Remember that from the show?” drew little more than a nod.

  The kind Kleinfeld ladies began walking us around the showroom. Stephanie pushed my chair, Marina beside me. They pointed out rooms like practiced tour guides, naming off the designers on display. Alita Graham. Pnina Tornai. There were rows and rows of dresses. Bedazzled. Be-blinged. Tulle clouds that made Princess Diana’s dress look modest.