After YouTuber Jesse Ridgway announced he and his wife terminated a pregnancy because of a Down syndrome diagnosis, I found myself thinking about the love and joy that often go unmentioned.
Read MoreChris paved the way. I didn’t know this when he was alive, how one human being would alter us, how one human being would show us a world we might have looked away from had we not known him.
This dawned on me as I sat with my family at the wedding of Chris’s grandnephew a few weeks ago. And this realization has stayed with me, that Chris McLean didn’t change just my family and me. He opened the eyes of everyone who knew him. And then everyone who knew him opened even more eyes.
Read MoreI wasn’t with Lucy when she got her longed-for curly hair. Her mother took her to the appointment — which lasted for hours — where Lucy’s hair was washed and combed and cut, then set in rollers and squirted with solution. Then there was sitting and waiting and waiting and waiting, then more solution and more waiting, and washing and conditioning and drying.
Read MoreThe words always come. That’s what I tell myself when I can’t find them. I sit. I think. And I wait. And when the words still won’t come? I ask myself what it is that I am struggling so hard to say?
Maybe this time what I’m struggling to say is simply thank you. Thank you, world. Thank you, Canton High. Thank you, friends and relatives and neighbors and teachers and doctors and dance instructors and used-to-be strangers who have walked this road with us, sometimes many times, leading the way.
Read MoreSometimes, when I am trying to cross the street in front of my house, I count the cars that whiz past. Forty-eight is my all-time high. Mostly it’s about 30 before someone lets me cross. I live on what used to be a country road but is now a busy cut-through. By the time I get from my front yard to the sidewalk across the street, I’m generally sour on the human race. That’s one reality. Here is another…
Read MoreI flew to California the day before her birthday. It was a big birthday, her 16th. And I was sad leaving her.
"I already miss you," I moaned when I kissed her goodbye. Lucy looked at me and smiled, cocked one eyebrow and said, "Save it for Farley," which is Lucy teasing, Lucy pretending to like Farley (a favorite teacher) more than she likes me. It's a game she invented, something she says when she wants to get a rise out of me, her words a joke.
Read MoreMy granddaughter Lucy was born in June 2003, not so long ago, but it was before Facebook, before World Down Syndrome Day, before companies hired models with Down syndrome, before the TV show “Born This Way,” before Google was a verb making it easy for people to network and learn. Lucy was seven hours old when a doctor, who didn’t identify himself as a doctor, walked into my daughter’s hospital room, unswaddled Lucy and announced…
Read MoreI wasn't there. Only the parents had tickets. Schools aren't big enough to accommodate all the grandparents and aunts and uncles and friends who would like to be present at an eighth-grade graduation. So we get pictures and…
Read MoreThe knobs are long gone, so turning on a television isn't quite as easy as it used to be. Charlotte is on the telephone instructing me. She's trying…
Read More'You plant black-eyed peas, that's what you git," my daughter's friend says in an Oklahoma drawl she exaggerates whenever she wants to make a point. I laughed when I first heard this phrase some 20 years ago, but it's a saying our family quickly adopted.
I found myself thinking these words while listening to my granddaughter Lucy belt out the score from "Gypsy" on our drive home from seeing…
Read MoreFor a long time after my granddaughter Lucy, who has Down syndrome, was born, I looked at healthy, typical babies with envy. They were everywhere — at the mall, at the playground, cooing, smiling, sitting up, playing patty-cake, walking, talking, meeting every developmental milestone right on time, their perfection a constant…
Read MoreWhen my granddaughter Lucy, who has Down syndrome, was born almost 13 years ago, only my daughter's friend, Kerry, without missing a beat, congratulated us.
Everyone else, including me, was full of sorrow and sighs.
This was before the Internet began spreading good news…
Read MoreIn my head I am graceful, a lithe thing, long arms and legs that are fluid yet firm. A natural dancer.In reality, when I signed up to be part of a flash mob a few years ago, the director, seeing me dance, took me aside and said…
Read MoreThere is such joy in Lucy. I don't always see it. Sometimes I'm too focused on improving her, reminding her to stand up straight, to look a person in the eye when she's saying hello and goodbye, to slow down her words when she talks.
"Can you say that again, Lucy?" "Where are your shoes?" "Did you brush your teeth?" "Do you have your seat belt buckled?" Always on her case but for her own good, right?
Read MoreMy granddaughter, Lucy, has Down syndrome. When she was born 11 years ago and I heard these words, I was shattered.
Stereotypes take a long time to die. My head was full of them, despite knowing Chris McLean, who has Down syndrome and has been part of our extended family for more than 40 years, despite having watched the television series "Life Goes On" and seeing how much a person with Down syndrome can accomplish.
Read MoreIt was the middle of the heat wave and we were inside sitting on the floor, Lucy using my iPad, looking at Disney characters on YouTube. "Not that. Not that. Not that. This one, Mimi!"
Then she clicked and Mulan sang.
"Who is that girl I see
Staring straight back at me?
When will my reflection show
Who I am inside?"
Read MoreIt was the middle of the heat wave and we were inside sitting on the floor, Lucy using my iPad, looking at Disney characters on YouTube. "Not that. Not that. Not that. This one, Mimi!"
Then she clicked and Mulan sang.
"Who is that girl I see
Staring straight back at me?
When will my reflection show
Who I am inside?"
Read MoreMy husband says I would know if I swallowed an ant. I'm not so sure. Right up until the ant, it had been a perfect day. Sunshine. Warmth. I got to play in my garden for the first time in so long that I had forgotten how the earth smells in spring: new like the top of an infant's head; fresh, like my dog Molly's breath when we first met her, when she was just 6 weeks old…
Read MoreThe pictures are ordinary. There's Lucy in front of Cinderella's castle. There's Lucy on the Dumbo ride. There's Lucy standing next to Prince Charming.
These are shots that everyone takes. "Stop. Look at me. Say 'cheese!' "
Read MoreSometimes I think it’s as simple as this: Lucy was born on the wrong planet. There was a mix-up in Paradise and she got on the wrong shuttle and ended up here on Earth instead of in some galaxy a trillion miles away where everyone is like her….
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