Dear Me

For Down Syndrome Awareness Month, which kicks off today, I participated in a campaign put on by Down Syndrome Diagnosis Network, in which parents of kids with DS gave advice to themselves at the point of diagnosis. This was a fun one to write, since five years has given me a lot of hindsight! This will run tomorrow on DSDN’s platform. 

Dear Me from Five Years Ago,

Wow, hey, congratulations! You just had a baby! He’s beautiful—six pounds, eight ounces of perfection. The spitting image of his big brother! You must be so happy.

Wait, why are you sitting alone in a hospital recovery room, with silent tears streaming down your face? Where’s that beautiful baby you just had? What? You just found out he has Down syndrome, and they’re checking him out to make sure he’s otherwise healthy? You’re sitting there all alone, googling on your phone and becoming more worried by the minute?

Put down that phone, girl. Put it down right now and listen to me. Because I’m you, five years down the road, and I know a lot more about your baby boy than Google does.

Like, for example, did you know that in a couple of weeks, when the shock wears off, you’re going to wonder why you felt so confused and lost? You’re going to look at that beautiful little boy, whom you named Sam, and you’re going to marvel at what an utterly perfect human being he is, with that tiny little nose, those tiny little ears, and those almond-shaped eyes that sparkle different shades of blue in the light?

Did you know that your heart, which feels kind of torn apart right now, is going to mend itself in such a way that the cracks are still visible and open, but bonded together so tightly that it feels a hundred times stronger than it ever did before—even when one of those cracks splits open every now and then?

And did you know that you have strength in you beyond what you would’ve ever guessed? You’re going to find your inner advocate, and you’re going to be a champion for that beautiful little boy.

Did you also know that you’re about to enter the most amazing community of people who have learned the same incredibly well guarded secret that you will learn: that life is better when it’s enhanced by a loved one who has an extra chromosome? That the little things are what really matter, and that even the tiny goals are absolutely, positively, always worth celebrating?

Did you know how many incredible people you’ll meet as part of this new community? You’ll meet people with Down syndrome of all ages, and you’ll meet the families who love and support them. And sure, you’ll have differences of opinion sometimes, but by and large you’ll find the strength, love, and support in this community to be so powerful that you’ll wonder how you ever got by without it.

Did you know, too, that having a child with a disability will open your eyes to people with different disabilities in a way that you didn’t see before? This new world of people will make your life so much richer and your outlook so much more open than it ever was before.

Did you know that in five short years, you’ll be walking your amazing little boy into his first day of kindergarten? His tiny, chubby little hand will be wrapped around your finger as he marches down the hall, but then he’ll let it go and run off to the playground with the other kids, and you’ll be left with the sweaty, sticky reminder of his firm grip on your finger.

Did you know that in five years, you’ll be looking toward his future, and it will look so very, very bright?

It’s okay to cry now, mama. It’s okay to feel a little overwhelmed and a whole lot confused. You can even let some tears fall on that sweet little baby while you cuddle him. He won’t mind. He never minds. He simply loves you 100 percent. And pretty soon, your tears will dry. Sure, they might fall again now and then, because sometimes life hands you pieces you don’t like. But far more often, the tears you cry will be tears of joy over your sweet boy.

Chin up, mama. You can only imagine how amazing your life is about to become.

Yourself, Five Years Later



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