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.