Two Years In: Down Syndrome, Recognition, and Pride

My son with Down syndrome was born just a little before Thanksgiving, two years ago. We became a family of five and entered into the holidays, excited and grateful.

Right around Christmas, my mind began to run in ways that I could not seem to put to rest. The features of his face… I couldn’t put my finger on it.

I don’t think I’ll ever forget that week between Christmas and New Year’s. One of those mornings, he opened his eyes.

Then came the flash of recognition.

The first thing I thought was, “Can people look like they have Down syndrome, without actually having it? Because there’s probably no way my kid has Down syndrome.”  The rest of that story is, of course, history. The next days and weeks were filled with a lot of confusion and soul-searching. I would not characterize that time as an easy period of my life.

I find myself pondering the word “recognition.” In that moment, was I maybe having a moment of “re” + “cognition”, as in, understanding again?

From my completely self-centered parent’s perspective, I can write about the holidays as forever being a time that will remind me of when I “discovered” that my son has Down syndrome. That’s pretty silly though. My son has always had Down syndrome, after all.

Two years later, my memories of that week are not entirely about grief, not about sadness or tears.  I’m not denying that part of the experience, but the larger picture is of the process of recognizing the truth that was before us.  Recognizing my baby for who he was, every part.

I’ve also learned from the disability community about the deeper meaning of recognition.  Look in the dictionary, and one will find recognition as not just acknowledgment, but also of legitimacy, validity, and acceptance.  I’ve listened to the words of countless disability advocates showing up every day, saying the hard truth, demanding recognition of what is true and just.  And with those demands, I see a whole lot of pride.  Loud and unapologetic pride.

Stella Young was a disability activist who passed away just a few weeks ago.  She had a tattoo that said, “You get proud by practicing.”  Young was one of the first writers in the disability community who really spoke to me, really shook me out of my confusion and made me reconsider everything I’d ever thought about disability.  Young’s tattoo comes from a poem by Laura Hershey, and I’ll put an excerpt here:

You do not need
A better body, a purer spirit, or a Ph.D.
To be proud.
You do not need
A lot of money, a handsome boyfriend, or a nice car.
You do not need
To be able to walk, or see, or hear,
Or use big, complicated words,
Or do any of those things that you just can’t do
To be proud. A caseworker
Cannot make you proud,
Or a doctor.
You only need more practice.
You get proud by practicing.

I am not considered disabled.  I am a neurotypical, able-bodied person who is raising a child with a disability.  Yet I read Laura Hershey’s words, and I recognize that I, too, need to practice.  Why?  He’s two years old.  I’m his gateway.  I can either enable or block his path to power and pride.

As a parent, I cannot say that my entrance into the disability world was easy.  I doubt that it will ever be easy for me to walk this path; no parenting is.  But two years later, another holiday season is passing, and I’ve come to see an entirely different context for what I experienced.  Practice is hard, and practice might hurt, but I’m immeasurably grateful for beginning that journey.

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Dear Sparrow

Dear Sparrow,

I’m going to call you Sparrow, cool?  Cool.  You have the cutest little face with such dark black eyes.  And well, you sort of flew into our lives.

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My mind was full of thoughts during my labor with you.  In fact, my mind was full even up until the end, when I birthed you. Frankly, it complicated things. Probably not the last time I’m stuck in my own head when I should just be taking your lead.

Mostly, I was full of questions about who you were going to be. How could I simultaneously feel such a deep sense of knowing you, without ever having laid eyes on your face? Even at three weeks old I don’t know much about you.  I don’t know if you’ll be reserved or boisterous, funny or serious. I don’t know what your struggles and triumphs will be.

What do I know? Well, you don’t like to sleep. You like milk. A lot. Sometimes, after a long crying jag, you let out the cutest, exasperated, defeated sigh. Like I’m just not getting the memo that you need to be bounced or fed at all times.

So clearly, I don’t know much.

Yet, I can’t help but feel like I do know you. I know you, like a tree knows when to put out new buds, birds know which way to fly, or a river knows which way to flow. I’m your mother and I know you, you know? This knowledge seems at once so simple, like a reflex, but also has a sense of eternity; even as your path twists and winds itself away from our joined beginning, I will always know some essential part of who you are.

Still. I am just your beginning, not your middle or end.

But goodness, what a beginning it is. During every moment of calm since you were born, I’ve been trying to soak you in, as if I could psychically reabsorb you just for a moment, and we would be one again. I know that every time I smell your soft, downy head that these moments are numbered.

You might wonder, if you are reading this as an adult, why I seem so bittersweet about our beginnings together, why I seem so keen on holding onto this feeling. It is because, this may be your beginning, but you are my middle. It feels as if my whole life has worked up to you and your brother and sisters. Your arrival has given me a sense of completeness that I haven’t been able to fully understand yet.

So. Welcome to the world, little Sparrow.

Love,
Your Mother

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Excuse me, I’ll be back after I have this baby.

No, I’m not in labor. But I’m close, and that’s pretty much all I can think about, so excuse me while I go obsess over cleaning my baseboards and organizing onesies.

Have so much I want to write about, but just… Can’t… Think… Straight. Brittany Maynard, therapy, collective storytelling, body acceptance… I’m thinking about it, I swear. Just can’t get it out right now. Like that sneeze that never comes, ya know?

In the meantime, here are some recent pictures of the Taters, currently three, soon to be four. Still haven’t thought of a nickname for the Fater. Any ideas?


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