NDS: Walking for a Cause
By Dan Samaria
Publisher/YC
Oct. 21, 2009
Editor’s Note: We would like to know what you think. And if one of your children has NDS, we would love to hear their story. That we can share it with others and to help those families that are going through this.
Remember your child is a blessing from God……
We would like to know what you think. dan@youngchronicle.com
We hope you will enjoy this special and blessing story:
By Beverly Beckham
Oct. 21, 2009
Before Lucy was born, I spent months trying to imagine my first grandchild. I pictured a boy with dark hair and olive skin and warm brown eyes, just like his father’s. I pictured strolling him in a pram all over town, taking him to church, reading him books, singing to him, and watching Disney movies together. Nicholas was the name my daughter and her husband had chosen for a baby boy and so it was to Nicholas I began writing letters.
In them, I told him stories about his mother and his father and the family he would soon come to know. I told him what was going on in the big bad world and in our own small and much happier worlds. I told him how many centimeters long he was and how much he weighed at two months in utero, at three months and at four months.
And then an ultrasound technician took a picture and said there was an 80 percent chance that Nicholas was a girl.
Dear Lucy, I wrote after that.
From the beginning I sang to this baby I’d yet to meet: “The very thought of you and I forget to do, the little ordinary things that everyone ought to do.” And from the beginning, I recited a prayer every day, which I tore from a “Daily Word.” “I am committed to letting you learn and grow at your own pace…. Throughout life you will be both a student and a teacher, for you have much to learn and perhaps even more to teach.”
Lucy came to us on June 20, 2003, the image of her mother, blond and blue-eyed, with all ten fingers and toes.
And one extra chromosome. Lucy had Down syndrome. And this eclipsed the miracle of her.
Six years later we know the miracle she is. Some people understood right away: There will be challenges but everyone has challenges. There are things that Lucy may not be able to do but there will be a lot more things that she will do. It’s all going to be okay, they said.
But most people were as misinformed as we were.
Raising Awareness and Promoting Acceptance
October is National Down Syndrome Awareness Month and throughout the
country and around the world there are Buddy Walks. The National Down Syndrome Society began the walks 13 years ago to integrate people with Down syndrome so they will be accepted and included in schools, in the workplace, and in life. Because for decades and decades, the medical establishment shortchanged them, said they couldn’t learn, said they weren’t worth teaching, and said they should be institutionalized.
And this misinformation lingers
When Lucy was a baby, I strolled her in a pram all over town just as I’d imagined strolling any baby. I took her to church. I continue to take her to church. We read books. We sing songs. (”The Very Thought of You” is one of her favorites.) And we watch Disney and all kinds of movies together.
Last week we walked in our local Buddy Walk, Lucy, her family, and friends along with 2,000 other people around beautiful Lake Quannapowitt in Wakefield, Mass.
Karen Gaffney, a young woman who was part of a relay team that swam the English channel, who swam across San Francisco Bay seven times, and who swam across Boston Harbor on October 8, spoke to the crowd about what it’s like having Down syndrome, what it’s like to look different on the outside but feel what everyone feels on the inside. What it was like for her growing up, wanting friends, wanting someone to sit next to her in the cafeteria, wanting to belong.
It was a speech that many of us could have given.
People with Down syndrome are shorter than average and slower to learn. They have trouble enunciating because of low muscle tone (think how hard it is to speak clearly after a Novocain). And they have trouble with fine motor skills.
But they feel and hurt and think and wish and dream the same things we all dream.
“Throughout life you will be both a student and a teacher, for you have much to learn and even more to teach,” I prayed before Lucy was born, thinking only of what I would teach her, not having a clue about all she would teach me.
Source: Grandparents