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So there’s this Facebook status update that’s been rattling around in my head for weeks now. I’ve been afraid to actually write it down because I don’t want to jinx it. But – what the hell.

It goes something like this:

For as long as I can remember, pretty much since she’s been able to express an opinion, my younger daughter Sophie has refused to allow me to sing or dance. And then the other day — out of the blue, with no explanation — she announced that she’s lifting the ban. I can sing and dance whenever I want. 

Happiest fucking day of my life. 

Okay, before we go any further with this there’s something you need to know. I have a terrible voice. Like, the worst. Epic-ly bad. Seriously. I know what you’re thinking, you’re thinking, oh, it can’t be that bad.

Oh, but it is. Whatever you’re imagining, it’s worse.

And yet, I love to sing. It’s one of my greatest joys in life. Almost twenty five years ago, I dated a boy who played me Beatles songs on his guitar, and encouraged me to sing. He told me he loved my voice and I fell in love with him.

I know they say love is blind, but in this case it’s deaf. We’ve been married for 20 years.

Don’t worry, I don’t sing in public. But the shower? The kitchen? The car? Let the concert begin.

Unless Sophie’s within earshot.

Look, I get it. I have very distinct and painful memories of my own mother tuning into KOY radio on the Volvo station wagon and belting out the greatest hits of 1977. Sadly, I get my voice from her. And Sophie gets her honesty from me. I had no problem telling my mother in no uncertain terms to stop singing.

But it wasn’t the same. Nothing about Sophie is the same, thanks to an extra 21st chromosome that makes each of her cells act a little differently than each of mine. Or yours. One of the most common stereotypes about Down syndrome is that people with it are kind and loving. And that’s true. Sophie is a total sweetheart – until she isn’t. Then she has no filter. If you do something that annoys her, watch out. She’s gonna tell you. And keep telling you, until you stop.

Until very recently, it was not unusual for Sophie to yell, shriek, hit me, or even burst into hysterics at so much as the first few bars of Happy Birthday or a couple lines from a Christmas carol. God forbid I throw an impromptu dance party in the kitchen.

She wouldn’t even let me lip sync.

Part of me appreciates Sophie’s honesty. I’m grateful she can stand up for herself. And I realize that some of this is about control. There aren’t many times in Sophie’s life that she gets to be in charge.

But every time I opened my mouth and she shut me down, it cut a little deeper, because I couldn’t help but wonder — is this what the rest of my life is going to be like? Will I never get to belt out Landslide in the bathtub, or race down the 51, screaming my heart out with the Ramones?

When I yelled at my mom to stop singing along to the radio, she didn’t like it, but she knew it wasn’t forever. One day soon, I wouldn’t need a ride anymore. I’d be driving myself places, and not long after that, I’d move out of the house and go to college. She’d be a little lonely, but the car would once again be her concert hall.

It’s not that way with Sophie and me. Sophie has every intention of shacking up in our house – preferably in my bed, smack dab between her father and me – forever. For as much as she hates my voice, she loves the rest of me, and has a dozen rituals to prove it. She kisses me on the lips first thing in the morning, and at night waits so we can put our pajamas on together. She rubs lotion on my back and tells me how much she loves me.

And I love her back, more than I ever thought I could love another person. I can imagine living with Sophie for the rest of my life. That’s not to say it would be without complications. I treasure my alone time, something I didn’t really realize til I had a tiny person at my elbow constantly — asking who I’m texting, what’s for dinner, what are we doing tomorrow, next week, next month, next year and could we please watch one more episode of “Say Yes to the Dress?”

But I can deal with all of that. As long as I can sing and dance.

I don’t know what did it. Her sister, her father, her friends, my friends – for YEARS, people begged her to let up. I tested her constantly. Pretty much every morning from pre-school to freshman year, the drive to school ended in a fight because I dared to attempt a couple of Taylor Swift lyrics or the chorus of an Avett Brothers song.

Sophie was 100 percent committed to her decision to never allow me to sing  – until the day she wasn’t.

We were driving to ballet class. I don’t recall what song was on the radio, or what we were discussing, I just remember Sophie saying, very softly, “Mom, you can sing and dance whenever you want, from now on.”

I didn’t say anything. A few minutes later, I tested her and sang a couple lines. She didn’t protest. Every day after that, I waited for the ban to be reinstated. It wasn’t. The other day I even overheard her tell my mom that this year at Thanksgiving, she wants her dad and me to sing “The Two of Us” by the Beatles.

A few days ago, I was doing the dishes, absentmindedly humming a few bars to a pop song.

Sophie came up behind me and yelled, “MO-OM, STOP.”

I turned around, bummed but not surprised.

“Hey,” I said, “You said I could!”

She looked at me.

“I said you could sing and dance. I DIDN’T say you could hum!”


This piece was originally performed June 22 at the Great Storytelling Mashup of 2018 at Changing Hands Bookstore in Phoenix. 

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4 Responses to “Here’s The Facebook Status Update I’ve Been Afraid to Post”

  1. Another amazing piece and beautiful way to start my day! Thank you, Amy and Sophie, for the smiles;-)

  2. I laughed aloud—why? Because I too am banned from singing with this line from Beth (which is pretty covert, I think) “Sarah, just let ‘em [Beatles, Eagles, whomever] sing” like I’m spoiling it for her.

  3. Great writing, funny and spot-on true! Sophie reminds me of my son Steve. He told it like it was. His favorite report was, “What am I, Chopped Liver?” He knew just when to use it too.

    PS: But he always let me sing!

  4. Now I’m so curious about what changed her mind! But I’m glad you get to sing again!!

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My Heart Can't Even Believe It: A Story of Science, Love, and Down Syndrome is available from Amazon and 
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