To blossom

“Hope is the thing with feathers
That perches in the soul
And sings the tune without the words
And never stops at all.”
― Emily Dickinson

Today is World Down Syndrome Awareness Day. For the last week, I’ve been thinking about a blog that would adequately celebrate and educate on this day. I’m still completely stumped. I’m really not sure what to write about. Here goes. Sorry if it is a mess.

For the longest time, Down syndrome and Mia seemed synonymous. I couldn’t look at her without seeing T21.It occurred to me over the past week that as her personality has begun to fully emerge, I’ve thought about Down syndrome less and less. Now I look at Mia and just see Mia. Her joyful little smile, excited baby expressions, funny looks, her willful determination and overwhelming curiosity, and her sweet loving eyes. I see her.

And I love her. Oh, the love. For so many months before her birth the fear eclipsed the love. Even after her birth, I felt the love but it always had that dark cloud of fear hanging overhead. All of that is gone now. I worry about her future, yes, but only like a mother should, and I’m no longer afraid of raising this sweet, amazing little girl.

Albert Einstein said, “Any fool can know. The point is to understand.” I want everyone to hold Mia, to talk to her, and to look into her eyes. I want them to understand. Down syndrome is just her diagnosis. It doesn’t define who she is. No amount of medical definitions, journal articles, or statistics will be able to describe Mia. She is Mia, a unique and wonderful little girl. A little girl who, like everyone else, deserves to be understood.

My biggest surprise? The joy. The joy I feel every day. The joy I see in her. She exudes joy. After Mia was born, Nate and I said (maybe a little sardonically) that it was too bad that the extra chromosome didn’t give Mia some sort of super power a la the X-Men. Like it’s too bad that instead of causing delays and health problems, the extra 21st chromosome gave her the ability to walk through walls or something. We’d laugh about it sadly, especially early on.

Then a couple weeks ago, I thought back to that bad joke and laughed to myself. I laughed because it’s true. Somehow Mia did get blessed with a super power. The joy. She’s so full of it she just can’t help herself. And every time she smiles at me I can’t help but smile, too. She smiles, I smile, she smiles more and all of a sudden I’m so full of joy I can’t help but forget all the things I was sad about before.

I mean, I expected a lot of feelings to emerge after I had Mia. I expected sadness, disappointment, frustration, anger, and maybe some happiness, but joy? It’s by far my biggest surprise. Sometimes I see so much joy in her and in me and everyone that she meets that I want to laugh out loud.

Someday I’ll take a video of waking her up in the morning. I unwrap her swaddle, she stretches, yawns, opens her eyes and flashes me the biggest smile, and then another and another. It’s like unwrapping a little bundle of joy every single morning.

Why is it hard to write this blog? Because my life is so normal now. What seemed like the big scary thing is slowly, over time, becoming the little thing. Do we talk about it, yes, but it’s being pushed aside for more important things – like enjoying and raising and loving our two beautiful little people.

I believe now that I needed that early time with her when I just saw the T21. I needed that time to let my fear disappear as her personality emerged. Just like a good spring rain washes away what is left of winter before the flowers bloom.

Happy World Down Syndrome Awareness Day! I’ll be celebrating with my sweet little blossom.