Choosing a wedding dress for my 14-year-old daughter

Diagnosed with motor-neurone disease, Susan Spencer-Wendel has written a book, Until I Say Good-Bye: My Year Of Living With Joy. In this heartbreaking extract, she writes about the realisation she wouldn't live to watch her teenaged daughter get married and her decision to take her dress shopping to create the memory. 

The story of our trip to New York's Kleinfeld bridal boutique cannot be understood without further zooming into focus on this 14-year-old who is my daughter. Key word there: 14. As we pulled up to our hotel on Times Square, Marina noticed one of her favourite clothing stores across the street. "Oh my gosh! It's three storeys!"

Inside the hotel one evening, we boarded a lift with pizza boxes. Another couple in the lift also had pizza, and we chatted pizza with them. "Man, that was AWK-ward!" Marina said of the pizza chatter as we got out of the lift.

This was the girl I took to the fancy store for wedding dresses. A child. An awkward,, beautiful child. I'd arranged the bridal boutique visit 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 neared, I'd 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.

My sister Stephanie and Marina arranged for a van to take us the 25 blocks: an over-the-top handicapped van with a wheelchair lift. On the ride, Marina kept looking at me: "You okay, Mom?" "I'm fine," I said.

At the boutique, I was unloaded like a piece of cargo. We rolled across the bustling, dirty city footpath and into a dream. Flower arrangements three metres 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.

The sales ladies began leading up around the showroom. There were rows and rows of dresses. Bedazzled. Be-blinged. Tulle clouds that made Princess Diana's dress look modest. Marina and I were overwhelmed. "Want to try one on?" I slurred. "Okay," Marina said.

As she disappeared silently into the dressing room, I tried not to think of her as a baby in my arms. Nor her with her own baby in her arms one day. I tried not to think of Marina right now, embarrassed by her mother's plans. By things she could not and should not yet understand. Rather, I poured out wedding-dress tips to Stephanie.

I am leaving money in my will for Marina's wedding dress. Steph has promised to bring her back to Kleinfeld to buy it. Which in itself is crazy. You see, Steph's favourite clothes place is what we call the "Hoochie Mama" store, where polyester sundresses and plastic stiletto shoes are all $9.99. She often pours her ample chest into polyester in such a way that I worry about a wardrobe failure. And this was the woman I was counting on to help Marina pick the most lavish dress of her life. Alas. I just hoped the godawful glut of strapless gowns out be outsourced to China by then. They made women look like linebackers. "No stark white!" I said. "Ivory. Not too much tulle. Think lace."

Marina had picked an A-line dress, or more precisely, the Kleinfeld ladies had picked it for her. Marina could only nod. "Think royalty when picking a dress," I counselled Steph as we waited outside the dressing room. "Think Princess Kate. Sophisticated. Elegant. Think long sleeves. They transform dresses to more formal."

Marina came out. Strapless. Flared. She looked like a 14-year-old girl parked in the middle of a cupcake. "I don't like poufy," she said. That's my girl! "How about trying on one with long sleeves?" I asked her.

I had mentioned to the sales women that my all-time favourite dress was the one Bella wore in the film Breaking Dawn. The ladies brought out a similar dress: long lace sleeves and empire neckline, a ruched, fitted waist, long smooth silk skirt with a train. Marina disappeared into the dressing room.

Meanwhile, I laid on "when the day comes" advice for Steph – advice I can't remember, for my heart was in that dressing room. The door opened. Marina appeared, a foot taller and a decade older. I could see the beautiful woman she will be one day. I simply stared. What do you do in bright-line moments, when your loss whomps you on the head? When you glimpse a moment you will not live to see?

I dipped my head. Breathe, I told myself. I looked up. I smiled, and Marina smiled back. I worked my tongue into position to speak. "I like it," I said. Marina usually stands with a teenage hunch, but in that dress she stood straight, radiant and tall. "You are beautiful," I whispered, my tongue barely co-operating. I don't know if she heard me. I was slurring and fighting tears. We took some photos, And moved on. A memory made.

Marina returned the dress and went back to her jeans and sneakers. There were too many people around to say what I wanted Marina to hear. How special she is to me. That I will always be with her in spirit. But it was not the place for such a conversation. Not with two saleswomen swirling around us, giving veil advice.

Kleinfeld had been hesitant to let us try on dresses, worried that scads of terminally ill mothers might descend on them. No worries. It wasn't the place for saying words you hope your daughter will remember all her life. 

They loaded me into the handicap van. "Can we get pizza on the way back?" was all Marina said. "Of course," I replied. That night as I slept, Marina lay down beside me. "You are so cute, Mom," Steph heard her say. She kissed me. When I awoke the next morning, my daughter was sleeping beside me.

Edited extract from Until I Say Good-Bye: My Year Of Living With Joy by Susan Spencer-Wendel (Two Roads).

Watch a video about Susan below: