This month’s eParent post was written 10 years ago, a flashback preparations for my daughter Sophie’s second open heart surgery. It’s been a decade, but I still think about the timing of that last operation. Sophie rarely mentions her heart anymore – not in an anatomical sense, anyway. This year she plans to be Cleopatra for Halloween.
In our house, this year Halloween began in July. Actually, it might have been June. This had nothing to do with Annabelle, who is 6, or Sophie, who is 4. It was all me. I was the one who announced, one hot day, “Let’s decide what you’re going to be for Halloween!”
I’m not sure when Halloween became the new Christmas, but lately I’ve noticed I’ve been flying my holiday freak flag a lot. This summer, I had the luxury.
Looking back, I realize that Sophie developed an odd habit, these past few months. At first, I thought it was endearing – like the way she runs like a wind-up toy and screams, “OH MY GOD!” when something really impresses her. When it’s time to read books and cuddle, Sophie has taken to climbing into our laps and taking my hand, or my husband Ray’s hand, and placing it gently on her chest – over the bump the bone made where it mended after the open-heart surgery she had when she was 4 months old. She’ll settle in, sneak her forbidden thumb in her mouth, and sigh.
Sophie rarely sits still for long. She didn’t walk til she was 3, which is not unheard of for a kid with Down syndrome, but she’s been making up for it ever since – negotiating stairs, racing on the beach, even trying out the rock wall at Ray’s climbing gym.
This is a kid born to trick or treat. What other night of the year is it appropriate to take candy from strangers – then hug them?
Annabelle announced she’d be a vampire for Halloween. It was decided that Sophie would be a bat. “Perfect!” I declared, confident I’d nailed my holiday photo. But soon, the girls had cycled through several other options — much to my dismay. One particularly vexing evening, Annabelle refused to be anything but a witch. “What will Sophie be?” I whined, in a tone I’m not particularly proud of. “She can be my broom,” came the quick reply. I was doomed!
Now, this is the kind of drama that only the mom of healthy kids can indulge in, and I binged all summer. Until Ray called one morning in August, on his way home from Sophie’s routine heart check-up.
“Are you sitting down?” he asked.
“I’m trying to drive!” I snapped, annoyed at the traffic and the heat, cocky after so many uneventful doctor visits over the last 4 years.
“Sophie needs open heart surgery again,” he said.
“No.” That was all I could think of to say. “No.”
But no is not an option. The badly leaking valve is not an emergency, but Sophie needs an operation soon. First I thought of Sophie putting my hand on her heart. Has she known all along?
Then the holiday season – Halloween, Thanksgiving, Hanukkah, Christmas — flashed before my eyes. And disappeared. We scheduled a consultation with the busy surgeon, who cancelled twice, then still had no answers. September turned into October. I got the Halloween decorations out and hung them up.
One night, the phone rang. It was the surgeon. I held my breath – and my tongue. What kind of mom sacrifices her kid’s health for a dumb holiday? He was quiet for a moment, looking at the calendar, figuring out anesthesia, an operating room. Then he had a question.
“Do you celebrate Halloween?”
“Well, yes, we do,” I answered, “but of course….”
He cut in. “Well, I have an opening on October 29, but let’s do it on November 7, instead, so Sophie can go trick or treating.”
A couple days later, the girls announced their final costume choices. I ordered the vampire dress and the bat wings before anyone could change her mind. It’s going to be the best Halloween ever.
Amy Silverman is a writer, editor, teacher and — most important — mother. Her daughter Sophie has Down syndrome. Sophie is 13 and fully mainstreamed in the eighth grade in a public school in Tempe, Arizona, where she lives with Amy, her father Ray and big sister Annabelle, 15. Sophie is a cheerleader — both at school and with Special Olympics. She also studies ballet and drama and has appeared in performances with Center Dance Ensemble and Detour Company Theatre. For many years, Amy has explored what it means to have Down syndrome in the 21st Century on her blog, girlinapartyhat.com. Amy has also written about Sophie (and a lot of other things) for New Times, the alternative newsweekly in Phoenix, where she is managing editor. In addition, Amy’s a contributor to KJZZ, the National Public Radio affiliate in Phoenix, and her work has appeared on the radio show This American Life, in the New York Times, Washington Post, salon.com and many other places. She co-teaches the long running workshop Mothers Who Write and co-curates a live reading series, Bar Flies, both in Phoenix. Amy’s first book, “My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome,” was published in Spring 2016 by Woodbine House. To learn more, visit myheartcantevenbelieveit.com