Dear Sophie,

You know, I have been writing this blog for the last 8 years — I started it on your fifth birthday, to document your year in kindergarten — but I’m not sure I’ve ever actually written to you, only about you. So today, in honor of your 13th birthday, I thought I’d write you a letter.

THIRTEEN! How did this happen? People always say this, but I don’t know where the time went. It’s my best job and greatest honor to be mom to you and Annabelle. It’s funny, for as much as you two have changed since you were born, I feel like I’ve changed just as much — maybe more. I’m not any taller, and I haven’t learned how to do as many things as you two have, but I think I’m a lot wiser than I was before I knew you. One thing I’m certain of is that I definitely don’t know it all.

I think you know, Sophie, that you are the first person with Down syndrome I ever met. I think you and I (and the rest of the world, for that matter) are only beginning to really understand what it means to have it. I know you don’t always want it. And I get that, even though there are things about you — your beautiful eyes, your long toes, your ability to see the good in almost everyone, as well as your skill of doing the splits at the drop of a hat — that I suspect are a direct result of that extra chromosome. But I get that some days, it feels like Down syndrome is holding you back, weighing you down, and I suspect it might feel a little bit like trying to swim in a pool filled with Jell-O.

As your parents, your dad and I consider it our job to clear obstacles in your path and help you get to where you want to go — or, at least, figure out the target destination. I know Down syndrome sometimes makes that harder, and most of the time, when we talk about it, I don’t know what to say. I know parents aren’t supposed to admit that — we are expected to have all the answers. But I want to be honest. That is why I sometimes just give you a hug when you say you don’t want to have it.

But today, I know exactly what I want to say to you, on your thirteenth birthday. I know that you are the one who will be blowing out the candles and making that big birthday wish, but I have a wish for you, too, dear Sophie.

Please don’t grow up so fast.

I am surprised to be saying that. You see, when you were born, I worried that in a lot of ways you would never grow up. Down syndrome can mean so many things for so many people, and we did not know if you would walk or talk or read books. We didn’t even know if you would survive heart surgery. And so I wished hard for you to grow up — to get potty trained so you could go to kindergarten, to learn to swim, to study math and science and all the hard stuff at school.

You did it. You exceeded our expectations on all of the above, but more important than that, you are growing into a young lady with grace, poise, mad style and a wicked sense of humor. I love to be around you. You are not just my daughter, you are my friend. And you are a friend to others. Almost every day this year when I dropped you off in the carpool lane, you marched right into junior high, usually pausing to wait for a friend or two (or two boys at once!). I envy that about your, your easy ability to make friends and your desire to celebrate them, like you did when you called your BFF Tatum onstage with you during your choir solo so you could sing to her and share the spotlight.

The other day you told me that the first thing you wanted to do when you finished seventh grade this week was go shopping for school supplies for eighth grade. You always want to know what the plan is for the next hour, day, week, month. You love to make plans — for sleepovers, college, career paths. I get that, I have always been the same way. But it’s funny, for as much as I’ve spent the last 13 years pushing you forward and worrying about you growing up, now I want to yell at the universe, “Slow down!”

Don’t grow up so fast, Sophie. Don’t be in such a rush. The other day, you and your sister performed in your ballet studio’s annual recital. This year’s theme was Peter Pan and I sat in the audience and cried, watching the two of you dance so beautifully, so grown up and still children in so many ways. There is no Neverland, no way to freeze you like this forever, as you stand on the brink of becoming a woman. I wonder, Sophie, now that you’re a teenager, will you still cuddle with me? Eat chocolate ice cream for every occasion, and not care at all if you get it all over your face? Suck your thumb? I hope you give up the thumb — those braces were awfully expensive — but never the cuddles. You will always be my little girl, even in the high heels and  hoop earrings that top your list of birthday gift requests.

I will be honest. I don’t know exactly what the future holds for you, Sophie. I don’t know what it will mean to be a teenager with Down syndrome. We will have to figure out that one together. But if the last 13 years are any indication, the next 13 are going to be pretty awesome.

Happy birthday sweet girl!



Amy’s book, “My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome,” was published by Woodbine House this spring and is available through Amazon and Changing Hands Bookstore. For information about tour dates and other events visit and here’s a book trailer.

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13 Responses to “A Letter to My Daughter (Who Happens to Have Down syndrome) on Her 13th Birthday”

  1. Happy birthday, Sophie! Hope you have a very special birthday weekend and that all your wishes come true!!

  2. Happy birthday Sophie, hope you get those hoop earrings and high heels. It was nice to finally meet you at the book signing at Changing Hands.

  3. Happy birthday, dear Sophie! Your mom just made me cry. I too can’t believe how fast you are growing up … but I’m so glad you have such a great family to do it with.

  4. Happy 13th Birthday Sophie! May all your birthday wishes come true! I love reading about your adventures.

  5. Sophie, may all your birthday wishes come true! I love reading about your adventures! Enjoy your special day!

  6. Once again you have hit the nail on the head. Not just for 13 year olds with Down syndrome but for all 13 year olds. Girls and boys! What’s the hurry people? Good for you for reminding everyone to let their kids grow up without adding unnecessary pressure. PS Loved the book! It was compelling (couldn’t put it down), informative, and a lovely portrait of an amazing family.

  7. Thank you for sharing her with us, Amy. The days are long, but the years pass by in a flash.

  8. Sending a great big Michigan HAPPY BIRTHDAY to Sophie!!!! May all your wishes come true, for a gorgeous young lady.

  9. I have no words. What an Awesome birthday letter for Sophie!!! Now of Bat Mitzvah age. She is an Awesome young woman now. Mazel Tov Sophie!!!?Love, Cousin Stefanie

  10. Happy Birthday to Sophie! Amazing – my son, Robert, soon to be 18 always asks “Next?” – most often I only have the answer for what we will be doing tomorrow let alone years from now. However when he talks about getting married he prefaces it with “after I go to college”! Exciting to see what our kids futures unfold!

  11. Found your blog by chance.
    I too have a little girl named Sophie and my girl also has Down’so syndrome.
    Wish the two Sophies can meet someday!
    We are in Michigan!!!!

  12. Forgot to mention my Sophie will be 13 in October.

  13. We have sung to Sophie all weekend . .practicing up for Thursday when we can sing for real and OUT LOUD > .13 . .what a grand adventure – a little scary and daunting for a mom – but the absolute best for Sophie . . . she is a gift to this world . .we all truly, joyfully and LOUDLY celebrate that!!
    ps letters carry a definite magic . .this one shimmers – she will cherish its love forever

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My Heart Can't Even Believe It: A Story of Science, Love, and Down Syndrome is available from Amazon and 
Changing Hands Bookstore
. For information about readings and other events, click here.


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