She was born nine years ago on June 20, and it was the best of times and the worst of times.
Lucy's being here was what we had prayed for, what we had begged for. But not exactly. Because she was not the child we had imagined.
Read MoreWhen a doctor at Children's Hospital of Philadelphia told New Jersey mother Chrissy Rivera last month that her 3-year-old daughter was ineligible for a kidney transplant, she was incredulous and furious.
``Did you just say that Amelia shouldn't have the transplant done because she is mentally retarded. I am confused. Did you really just say that?'' she wrote in her blog on wolfhirschhorn.org describing the meeting.
Read MoreOn July 15, the magazine GQ proclaimed on its website that the people of Boston are the worst dressed in the country.
This should have been a lighthearted summer story, raising ire and eyebrows, but with a wink, too. We're just teasing, Boston. We just want you and everyone else to read our magazine!
But what was silly turned serious when writer John B. Thompson, in a poor attempt at humor, penned these words: ``Due to so much local inbreeding, Boston suffers from a kind of Style Down Syndrome, where a little extra ends up ruining everything.''
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….
Read MoreKristen Franks loves her sister Jacqueline. She loves her wit and her compassion and her work ethic and her tenacity.
She loves that Jacqueline has a job where she is valued and appreciated, and that the people she works with respect and admire her.
Kristen's love for Jacqueline is full of quiet pride. See all that she is. All that she does. See how people like her. See how easy she is to like. This is what her eyes say.
Read MoreKristen Franks loves her sister Jacqueline. She loves her wit and her compassion and her work ethic and her tenacity.
She loves that Jacqueline has a job where she is valued and appreciated, and that the people she works with respect and admire her.
Read MoreHer name was Judy. She had thick, dark hair, which she pulled into a pony tail, and though I coveted that pony tail (my hair was curly and short) and though we were the same age - 8 or 9 when we met, 12 the last time I saw her - we weren't ever friends.
She had braces on her legs, big metal ones, and her gait was slow and labored, and I wanted to ask her why. What happened? Did you have polio? Because polio was the only illness I knew about.
Read MoreHer name was Judy. She had thick, dark hair, which she pulled into a pony tail, and though I coveted that pony tail (my hair was curly and short) and though we were the same age - 8 or 9 when we met, 12 the last time I saw her - we weren't ever friends.
She had braces on her legs, big metal ones, and her gait was slow and labored, and I wanted to ask her why. What happened? Did you have polio? Because polio was the only illness I knew about.
Read MoreI thought I would never forget the time, the place, the season. What I wore. What she wore. The faces of the people I met that day.
But I have forgotten. It's a blur. The only thing I remember is wanting to cry.
I had taken my granddaughter, Lucy, into Boston to a modeling agency. She was 17 months old. My grandson Adam, Lucy's cousin, was barely 7 months. It was his mother's idea.
Read MoreHe loves her and she loves him, and it is magic to see. Since she was a baby peeking out of her carriage, Lucy has smiled at Al. And Al, in his eighties, has smiled right back, their eyes locking, their hearts touching. You could say it's been love since first sight…
Read MoreMy granddaughter Lucy is 6 years old and is part of a class of people that is quietly being eliminated in my country. She has Down syndrome, a genetic condition that frightens so many women that 92 percent of those who learn they are carrying babies with it choose to abort.
Dr. Brian Skotko, a genetics fellow at Children's Hospital, fears this number will rise. Prenatal tests are invasive, carry a risk to the fetus, and are given in the second trimester, so many women choose not to have them. But a simple new and non-invasive blood test, to be given early in a woman's pregnancy, is coming, perhaps as early as next year.
Read MoreBlessed is a word I find myself saying a lot lately. How blessed I am. How blessed my family is. How blessed we are to have Lucy.
Six years ago, I didn't feel blessed. Lucy, my first grandchild, my daughter's child, was 12 hours old when we learned she had Down syndrome. We wept. Three days later, we were told…
Read MoreThis is what "internationally renowned" Sherman J. Silber, M.D., writes in his "completely revised and updated" book "How to Get Pregnant," published by Little Brown and Co. last August: "The biggest fear of most pregnant women is that their child will be abnormal, and the most common abnormality they worry about is Down syndrome. ... These children are severely retarded mentally, and they usually die before their thirtieth birthday." He also writes: "We can prevent couples from having to face the horror of giving birth to children with otherwise devastating genetic defects such as Down syndrome, cystic fibrosis, muscular dystrophy, mental retardation, etc., that terrify every woman who ever gets pregnant."
Read MoreFive hours in a car. It's a long time for a 5-year-old to be confined. But Lucy never complained. Not a tear. Not a tantrum. Not even a pout.
My granddaughter was happy, listening to Rodgers and Hammerstein's "Cinderella," (sung by Julie Andrews; the child has good taste) and singing along. She ate chicken fingers in a nice restaurant overlooking the water, then she was back in her car seat, singing again.
Read MoreChildren make the world go away. It's that simple.
The barrage of bad news on radio and TV, in newspapers and books, the endless deceit and fraud and abuses and lies, public and private, all the wars and broken hearts and broken bodies and broken dreams.
World without mend, amen.
Children displace these things. Not forever, but for a while.
Read MoreFirst things first: "Tropic Thunder" is not an intentionally mean movie that denigrates the developmentally delayed. It is a comedy that pokes fun at Hollywood's preposterous and stereotypical portrayal of all the people Hollywood thinks it knows but doesn't. A big vulgar, way over-the-top film, it's a series of fun-house mirrors exaggerating the bloated egos of actors, producers, agents, and the never-ending sham that is pretense.
Read MoreShe wasn't the prettiest child in the room, because they were all the prettiest, babies still, not one of them over 3, flawless skin, bright eyes, shy, sweet smiles. But my daughter and I were drawn to this particular baby because she reminded us of Lucy, my daughter's little girl, with her sweet round face and her light wispy hair and the thin pale line on her breastbone that told us she had had heart surgery, too.
Read MoreI strap her into her car seat and tell her that we are going to the doctor. And she smiles at me and says, "Mimi's house."
"First we're going to the doctor, Lucy, then you can come to my house, OK?" And then we sing, in big, booming voices, "Police officers, firefighters, a doctor or a nurse. They help me if I'm hurt. They help me if I'm hurt!" over and over until we arrive at Norwood Hospital.
Read More`The victories, when they come, will be sweet," someone, many someones, told us after my granddaughter Lucy was born.
But we didn't believe in victories then or that life would ever be sweet again. We were stunned and scared and grieving the child Lucy wasn't. The words "Down syndrome" had rocked our world.
We should have listened to the people in the trenches, mothers and fathers and sisters and brothers, people who knew and loved someone with a disability who kept telling us: She will be fine. You will be fine. You will be better than fine. Wait. You'll see. We've seen.
Read More“The tooth is missing. It will never come in. Missing teeth are common among children with Down syndrome,” the specialist told my daughter and son-in-law months ago.
He didn’t cushion his words. He didn’t say, “May not.” He said never.
And then last week, there it was – a lower right lateral incisor, next to her lower right central incisor, exactly where it belongs.
Read More
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