Playground Conversation

If you follow me on Facebook, you know how excited I was to take our family tenting last week. Our family hasn't been in a tent since well before Moriah's birth. We've planned camping trips since she arrived, but every summer we have had to cancel the trips because Moriah has been too sick.

Last Thursday, we actually did make it camping to a nearby campground...and had to come home after 20 or so hours away. The heat wave was too much for Moriah, whose breathing overnight that first night was too labored for our comfort. Jason and I stood on the campground's playground in the early morning hours while Moriah climbed its play structure and made the decision to come home even though it meant undoing nearly a week's worth of work--those of you who tent know how much time it takes to re-check equipment, to plan campfire meals, and so on. I sent Jason back to the campsite to begin dismantling our tents and re-packing our van, and as he left, I had myself a really good, disappointed-again cry. And then, as sometimes happens in life, something really extraordinary happened IN (not because of, or in spite of--this truth has taken me a long time to grasp) my disappointment.

A little boy--let's call him Joey--came bounding into the playground. He wasn't wearing pants, just his bundies, which I thought was a little strange. But hey, pant-less or no, Moriah had someone with whom to play (there was another, older boy on the playground who hadn't been too friendly to her, so I was relieved to see another playmate come along). Joey found the other boy to be mean and too rough, and formed an alliance with Moriah. When the other boy tried to trap them in the underbelly of the play structure by barricading the door to the playhouse there, Joey led Moriah out the other way, underneath the slide, and into the open field. He held her hand. He chatted incessantly to her, and even when she didn't respond, he was completely unphased, and kept talking. Joey: Moriah, want to go to the top of the slide again? Moriah: Yeah. Slide. Joey: I love slides, don't you? At home I have a swingset with a slide in my yard. It's yellow. Do you have a slide? Moriah: C'mon! It warmed my heart to see the very tender, very kind way he befriended Moriah, and the way she walked with him and followed him from the play structure to the sandbox to the pretend car--around and around they ran, playing and talking for nearly an hour.

About 30 minutes into their friendship, and well after the other less-than-kind boy had left, Joey's grandparents came bounding into the field--apparently Joey had left the family tent without waking his sleeping family (which explains why he was pantless). I pointed Joey out to them, hidden underneath the play structure with Moriah again, and told them how well he had been playing with her. And then something extraordinary happened. The grandpa watched the two of them for a minute or so, and said to me: "I just love kids. I don't think Joey even sees her disability at all."

Here's why his comment was so amazing: very, very rarely does anyone, especially a stranger, talk about Moriah's disability outright, and with kindness and warmth. I bear my share of rude comments from ignorant folks (questions about whether I "knew" before she was born and if I had known, whether I would have "kept" her and that sort of thing), and I get a lot of sugar-y nice generalities (comments about how "beautiful" she is, as if beautiful is some sort of stand-in for "special" or the unspoken "Down syndrome"). Right away, I liked this grandpa. We struck up a conversation then that lasted a half hour--turns out Joey's grandpa considers it his "life's work," his "soul's work" to work in a home for adults with developmental disabilities. He's done it for decades, and still loves it, and laments only the twenty-somethings who work there as a way to "get" somewhere else, who miss the beauty of the people who live there. He told me about learning to understand the people at the home as people, not as disabled people. He told me about Joey and Joey's speech delay (which, in my estimation, had all but resolved given Joey's profuse talking). It was, for this mom disappointed again by the limitations of life-with-Down-syndrome, a refreshing exchange and absolutely timely.

I wanted to write about the experience here because I think it's important that you hear this from me: I would rather talk about Down syndrome than not talk about it. I'd rather you say the word "disability" outright. I already know that Moriah has Down syndrome, and talking about it makes it less difficult, not more so. We can no longer pretend to be the Joeys of the world--running around half-naked and blissfully unaware of the differences among us (and what we do or do not have). That was a beautiful, amazing stage, and one we cannot visit again. We are adults, and when we gather on the playgrounds of life to share our stories, we should do so with our eyes wide open and our hearts laid bare. When we do, we can lay claim again to this truth: Our lives are not so much about what happens (or doesn't) to us. They are about the growth of our souls within those goings-on.

Our lives are soul work. Joey's grandpa told me that.

Happy birthday to my favorite girl

Dear Moriah,

You are in bed asleep; our day was so full, and began so characteristically early, and you didn't nap this afternoon and so by 6:30 tonight you were exhausted and went to bed without our routine books and prayer. But what a day it was--your fourth birthday! This is the first year that you've understood, really understood, what a "birthday" is. Last night you couldn't fall asleep because you were so excited; you kept calling me back to your bedroom to tell me something else about your birthday ("Mom, cake! Ice cream! Open presents!") or to sing (yet another) chorus of Happy Birthday to yourself ("happy birthday, Moriah, happy birthday to you") or to demonstrate for me how to blow out candles. I hope the day was as happy as you anticipated; we were able to spend most of the day today at Papa and Gramma's house with your cousins, and I know that for you, any day with cousins at your grandparent's house is a happy one indeed.

I think this is the first birthday that I've also really understood. What I mean is, I've understood it as your birthday, and it hasn't made me at all sad. Yesterday I was baking birthday cupcakes for you and suddenly remembered something I had forgotten about the day you were born: Orilus and Jackson had brought a birthday cake they had made with them to the hospital, so that we could celebrate your very first day of life together.

This had been my idea, a way to help them, too, to feel included in the day you were born. And yesterday I suddenly had this flashback: the cake pan sitting, untouched, in the hospital room all that day, a sort of sad symbol of things that didn't go at all as we had expected. I think that cake traveled with me in an ambulance, as I rushed the next day to follow you to Boston; eventually, Dad took it home, completely unopened and uneaten.

We didn't celebrate your birth-day, Love. We were all just too surprised with you, and too worried about you.

I remembered this cake in its covered pan yesterday, and you know what I did, Moriah? I laughed. Here we are, girl, four years later, eating pink-frosted cupcakes at 7 o'clock in the morning, watching you attend to your brand-new dollhouse (all I can say about that gift is that you must have really changed my life, my dear, because anyone who knows me cannot possibly fathom how I disciplined myself to spend the 40+ hours I've spent in this last month painting and putting together that yard sale find with your dad), listening to you talk to the Dad-doll as you forced him into a dining room chair ("No sleep. You eat. Sit down right here. C'mon!"), laughing as you gasp in surprise at (yet-another) Elmo video from your really patient and kind older brother, taking you a ba-zillion times to the potty today (you are nearly potty trained and we are so proud of you), watching you give your cousins huge hugs (Them: "Hug me again, Moriah!" You: "Squeeze!"). You are the girl of nose kisses, laughter, a strong will, smarts, and love. You have a way with babies (Miss Julie likes to call you the "baby whisperer") and music and basketball (you can dribble now and are pretty proud of yourself).

You climb stairs--up and down--on your own now, and you continue to jump despite the therapists' declarations that you probably wouldn't. You love to read--you read a couple books on your own now, pointing to each word and getting that "I'm so pleased with myself" look again and again. You are learning to swim--we had so much fun in your swim class this morning--and to go across monkey bars. You love to throw rocks in the pond at the end of our street. And--as you did before bedtime tonight--you love to bring people together, this time, grabbing your Dad and me and insisting that all three of us give one big giant hug.

That's you, Moriah--the girl who connects folks to each other.

Four years ago, when terror gripped our hearts and worry flooded into our lives, we couldn't have anticipated this day. Today, Love, we celebrated you. I didn't remember your birth-day with any sadness today; I didn't think about your future with any fear. Not once today did I even think about Down syndrome. Today was just about YOU, Moriah--amazing, remarkable, funny, beautiful you.

For many years now I've been telling you that you are my "favorite girl." This started as kind of a joke with your brothers, who always wanted to know which of them was the favorite when they were little. By calling you my favorite girl, I was choosing no one, and everyone. This year I've said to you nearly every day: "Moriah, out of ALL the girls in the world, YOU are my favorite." And Moriah, if there's one thing I hope you get in this life, it's this: Your mom thinks you rank right up there with the most accomplished, most inspiring, most interesting, most wonderful women who have ever walked this earth. You are the girl I most admire. For all you've overcome, for all you work with and through every day, for all the joy you are to all of us who know you, and for the particular gifts of groundedness, joy, and acceptance you have brought to my life...

...happy birthday to my favorite girl.

I'm in love with you, always.

Love,
Mom