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Amy Eckert Thomasson, a GRHS Class of 1997 graduate, lives in Lexington, South Carolina. She teaches Middle School Drama and writes for Insession Films while raising her two children, William and Elena.
“I’m so sorry to hear about your daughter.” I put my phone down and feel my face scrunch up. It’s ok, I think. He doesn’t know what to say. This is a teachable moment. Don’t get angry.
“She’s actually great! You’d be really surprised,” I text back, typing quickly and hitting SEND. I know I’ll never talk to or hear from this person again, a man who asked for my number when we met briefly over the weekend at a coffeehouse. And that’s ok.
Since my daughter, Elena, was born eight years ago, I’ve had to navigate comments from family, friends, and total strangers. I’ve learned how to give grace and patience when a “teachable moment” comes up. It hasn’t always been easy.
Elena has been living life on her terms since the day she was born, a full month early. Apparently, she couldn’t wait until her due date. We had no idea until she was born that she had Down Syndrome.
I didn’t get to hold Elena when she was born. They whisked her away, and I assumed it was because she was born prematurely. I knew everything was okay. She was 6 pounds, 11 ounces, strong and hearty. The nurses had her in a little plastic crib and wheeled her up to me. I smiled and told her I loved her and how beautiful she was. It was 3:41 a.m., and I was counting the hours until I could call my entire family up in New York to tell them that this gorgeous baby had made her arrival. She was taken 15 miles to another hospital in Columbia, SC, which didn’t seem like a big deal, since she was born a month early. Lots of babies are born early, I reasoned, still overjoyed, euphoric.
Later in the day, in a blissful afterglow from texting and calling every person I have ever known, the doctor from the other hospital called my hospital room to mention they were doing a sonogram of her heart. This didn’t make sense to me, because during all my prenatal tests, her heart had been strong.
I asked him why they were doing that test, and he said, “because of the Down Syndrome.” He thought someone else had already told me.
My stomach dropped, and my face did that thing when you try to tighten all your muscles because you are afraid your entire head will explode. All I heard was, “your baby isn’t perfect.”
My husband was at the other hospital, receiving the news at the same time I was. My son William, not quite two, was with friends. I was alone.
How could this be? I closed my eyes to remember what she looked like, wishing they had let me hold her. What will her life be like? People will hurt her, mock her, and then I will have to kill them with my bare hands! How dare I be so upset! This is my baby! She can’t help being born this way! What kind of awful person am I to feel sad? I am the worst person alive. What can I do to help her? I’m not enough. My beautiful baby deserves better than me.
The daughter I grieved for was the one who would call me Mommy, who would feel the same joy other children feel about birthdays, Christmas, and everyday life events like playing with friends.
"How severe is she?” someone once asked. “I’m assuming she’s pretty moderate because you describe her as 'sassy.'”
Elena is non-verbal. She lives day to day. While the rest of the family is happily opening gifts from Santa on Christmas morning, she is playing with toys she has had for several years. I’ve had to realize that this isn’t tragic. She might not be enjoying the morning for the reasons the rest of us are, but she is having the time of her life, and surrounded by people who adore her.
All children should be so lucky.
When she was six, she was diagnosed with Autism. Like other parents of children with special needs, I grieved – again – for the daughter I dreamed I would have. As a teacher, I have met and worked with special needs students, and my father was a Special Education teacher for over 30 years. When my own child was born, however, every logical thought flew out of my head.
It took my daughter, with all of her sass and strength, to help me see that the cruel world I was expecting seems to disappear when she is around.
No matter where we go, people go out of their way to smile and welcome her. To quote Elena’s ABA (Applied Behavior Analysis, aka Behavioral Engineering) therapist, “It’s Elena’s world, and we are all living in it.”
With her own method of communication, she very much knows how to get what she wants. I frequently get notes from Elena’s physical therapist at school telling me they needed to get the wagon to pull her to PT, because “Elena didn’t feel like walking there today.”
Elena rocks the world she lives in. 😇