Our World Down Syndrome Day part is 3/21 from 6-8pm at Matthias’ Lot Church in St. Charles. RSVP this week if you can come! DownSyndromeStC@gmail.com
Be sure to check out the DSAGSL.org page about WDSD. Some familiar StC faces helping the page be adorable! There may still be “three21” tshirts still available. Call the DSAGSL office at 314-961-2504.
Mark your calendars and clear your schedule… there’s a party you don’t want to miss!
World Down Syndrome Day! 3/21/13
And wouldn’t you know… we also have 3 of our little ones in the group who have birthdays on this day as well! We’ll be sure to celebrate them in a special way!
RSVP to DownSyndromeStC@Gmail.com or 636-395-0110.
The Down Syndrome Guild of Greater Kansas City produced a wonderful DVD called Just Like You - Down Syndrome. The informational DVD showcases 3 young people with Down syndrome and their friendships with people who don't have Down syndrome. It's educational about what Down syndrome is, and isn't, and the value of their friendships.
3-21-2011
For 3 copies of the 21st chromosome, unique to Down syndrome.
World Down Syndrome Day.
Take the chance to tell someone a wonderful thing about someone you know with DS. Or share with someone how your views have changed now that you know and love someone with DS.
Today, make a decision to be intentional about making others aware that a diagnosis of DS does not have to be met with utter despair, it doesn’t have to be a death sentence, and it is not a reason to take an unborn child’s life.
Just tell someone.
The IDSC for Life has put together a really nice video of some of our little beauties… I have my favorite in there, and a few who follow close behind her. Maybe posting a link to this in your Facebook status or on your blog or Twitter would be a great awareness opportunity.
The 2009 Walk in the Park event is this coming Saturday at Busch Stadium. I know several of our families are planning to go, and it looks like it’s going to be a great fall day for baseball!
Are you going?!? I am, and I’ll look for you!
Beverly Beckham writes for the Boston Globe and has many wonderful articles in her archives. Yesterday, she had another winner, called Seen Through Loving Eyes. What do you think? Have you had similar experience? Share your thoughts in the comments.
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My granddaughter Lucy is six 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.
“As new tests become available, will babies with Down syndrome slowly disappear?’’ Skotko ponders in a soon-to-be-published article in the Archives of Disease in Childhood, (a British medical journal) available online now.
It’s easy to understand why parents fear a diagnosis of Down syndrome. You Google definitions of it, and even now archaic words and misinformation pop up. It’s the same in doctors’ offices. Pregnant women are told only the negatives. Old stereotypes linger.
My granddaughter cannot do all the things that typical kids can. She doesn’t come home from school full of stories. They may be in her head, but we can’t see in there. She speaks and sometimes we don’t understand. She can’t make a teddy bear with paper and glue, not without help. She can’t understand why her grandfather would rather watch baseball than Shirley Temple. She does not have the same skills and abilities that her 5-year-old cousin Adam has.
But Adam doesn’t have the skills and abilities she has. He doesn’t always enter a room and greet everyone with a big smile. He doesn’t always leap to his feet and race to his father when he comes home from work. He can’t sit for hours in a fancy restaurant or through a long movie. And he doesn’t know instinctively when someone is sad and needs a hug.
He can field a ball and she can work a room. He sings a whole John Denver song, and she sits and applauds.
This is what doctors don’t tell mothers having babies with Down syndrome, that you will see in your child amazing things that you won’t see in ordinary children.
Of course, parents want healthy kids. And some get them. But children get sick. They get in accidents. They lose limbs. They suddenly stop talking one day.
Children in wheelchairs, on ventilators and crutches? Children hooked up to IVs getting chemotherapy? People on waiting lists for transplants? People with chronic diseases. Soldiers changed by war. Civilians changed by an accident.
They weren’t born this way. But if there were a test that showed their future - that showed diabetes and cancer and autism and muscular dystrophy and mental illness and depression and alcoholism - would women take it? And seeing what would be, would they choose to abort?
Last week we took Lucy to Davis’ Farmland in Sterling, where we played with the animals. Then we went to a wine tasting at Nashoba Valley, where Lucy drank juice and shared our cheese and crackers and enjoyed the day.
All kids with Down syndrome are not like this. But this is Lucy. She makes me notice the ordinariness of people who don’t have it.
In the play “Cabaret,’’ set in Berlin as the Nazis rise to power, a man loves a woman he’s not supposed to because he’s Christian and she’s Jewish. He tries to explain his love to his friends. And because “Cabaret’’ is a musical, his explanation is a song.
“If you could see her through my eyes, you wouldn’t wonder at all. If you could see her through my eyes, I guarantee you would fall, like I did. . .’’
Like I did. Like Lucy’s mother and father did. Like all the people who know Lucy and people like her did. Like the world would, too, if only given the chance.
Jeffrey Pomranka, the COO of the DSAGSL, wrote a letter to the editor of the Post-Dispatch that was recently published. It was related to the popular story from last month when a fan fell over the wall at a baseball game and was assisted by Albert Pujols. The fan had a son with DS. Jeff’s letter is well worth the read. Click here for the letter and Jeff’s explanation.
