Three days after Johanna was born, Jamie and I were sitting in a sterile conference room off of the hospital NICU, listening to the doctor explain the intestinal surgery he was going to perform on our daughter that Monday. When he finished, he asked if we had any questions.
“Just one,” I said. “Do you think she has Down Syndrome?” I knew the answer, obviously, but we were in a haze of waiting for chromosome tests to come back and still in denial.
“Yes,” he said, looking uncomfortable. “She has all the features.” And then, seeing my face, he said, “it’s not so bad. Some of them can even be toilet trained and dress themselves.” He smiled awkwardly, in what I’m sure he thought was a compassionate smile.
I heard my husband snort next to me. “Why’d you do that?” I asked him after the doctor had left the room.
He rolled his eyes. “All people with Down Syndrome are toilet trained and dress themselves.”
“Really?” I asked. I didn’t know anyone with Down Syndrome; the condition was still a mystery. “How do you know?”
“I know Hannah,” he said.
Hannah Lusthaus is 34 and has Down Syndrome. She lives in Montreal and has what she describes as a “fabulous” life. She works at Concordia University and helps coach the Concordia Stingers on the side. She works as an assistant camp counselor at a sleepaway camp during the summers. She travels on her own, dates, and loves to go shopping with her mother, Evie.
I first met her when Johanna was four months old. We were up at our summer cottage in Ivry, an hour north of Montreal, and Hanna’s mom, Evie, invited us to her house for lunch. Hannah was home for the weekend after a full week as working as a camp counselor. I watched her as she played with Jo Jo on the grass outside the house and I peppered her with questions.
“Have you had any surgeries?” I asked. I knew her mom had told me, but I couldn’t remember.
“Just one,” she said matter of factly. “I had my tubes tied.”
I blanched. I hadn’t expected that, but she kept talking. “It was my idea,” she said. “My friend had it and I decided to do it too.”
Since she was being so open I decided to ask her. “Are you sad that you can’t have kids?”
She shook her head. “It’s too much work. I’d feel overwhelmed. I like my life as it is.” It struck me that a few weeks earlier, a single thirty something girlfriend in Manhattan had told me the exact same thing.
When we left, she was sitting on the couch next to her mother, her head on Evie’s shoulder, their fingers intertwined. I watched the two of them cuddling and for the first time since Johanna’s diagnosis I didn’t feel sad. I could picture Johanna and I, thirty years from now, sitting close together and giggling.
Anyway, Hannah is amazing. Her parents, Evelyn and Charles Lusthaus, are amazing. And this video of her being named Montrealer of the Week is incredible. You can watch it here.
Here’s to hope for the future.