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Gifts : Mothers Reflect on How Children with Down Syndrome Enrich Their Lives

The Gifts Outreach program provides complimentary copies of Gifts to organizations which serve parents facing a new diagnosis of Down syndrome for their child, either prenatally or postnatally. We believe that the stories in the book provide a vital companionship and support for such parents.

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2008 Mom's Choice Awards: Silver Recipient, Special & Exceptional Needs

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Saturday, January 06, 2007

Please hold a family in your prayers....

that just received a prenatal diagnosis of Down syndrome and their doctor has given them six whole days to make a decision about termination. The baby's grandmother contacted the Indiana DADS group by email, and we have been providing information and support to her, to pass on to her son and daughter-in-law. I also gave her a copy of my chapter "Its Better Than Good" that is contained in the Gifts book and offered to send her a copy of the book. As I said in my chapter, I was once one of "them"- The ones that didn't "get it". I wish I could allow this family to fast forward to see the Gifts, the Joy, the Wonder, and the "typicality" of having a child with Down syndrome.

Prayers they can find this and save their baby.

A wonderful letter to the editor on the new recommendation for prenatal testing for all pregnancies:

Prenatal test can't measure the value of a human life
Christine Fraizer Salt Lake Tribune Article Last Updated:01/06/2007 01:52:59 PM MST

The prenatal test that doctors are recommending to detect Down syndrome has me running horrified to the keyboard. My son has Down syndrome and I am afraid the tests, which doctors want all pregnant women to take, will end the lives of individuals before they begin. And it's all out of fear. This is not a pro-choice, anti-abortion issue to me. I am fairly liberal in my thinking and would never condemn a woman for her choice to end a pregnancy. This is about my love for my son and the way some may perceive him. I never had a prenatal test, since I was barely 28 when August was conceived. There were no indicators that anything could go but normally for the pregnancy. I was young, healthy and had no family history that would suggest a genetic anomaly. I was also a long-distance runner, ate spinach, didn't smoke or drink and kept every single prenatal appointment. An ultrasound at 28 weeks showed short limbs for his gestational age, but that wasn't a red flag for further tests. So, yeah, when he was born and the doctor pronounced the verdict - Down syndrome - it was a diagnosis that shocked me and my extended family. I was raised Roman Catholic, and we received more Mass cards after his birth than one would expect following a death in a family. I knew nothing about Down syndrome except those fear-provoking characteristics even current articles often predict: mental retardation; a broad, flat face and small head; and, often, serious heart defects. It was a dismal period, to say the least. Nearly 20 years have since passed and I've come to learn some fairly profound lessons about life and what it means to be human. August has pushed me into seeing a world that I, too, feared those many years ago. Now, I don't want to give the impression that August's loss is my gain. It is terribly hard to raise a child with a disability and not because of how it affects my life directly. This is about August and the things I project are missing. I could go into my biases about the way society treats people with disabilities, but it's enough to say that August will not have the same opportunities for friendship, lifelong companionship, jobs or housing that those without a physical or cognitive disability tend to take for granted. Those are the losses - August's losses - that hurt. But that doesn't mean August's life is any less important, or that there isn't a life here for him. He's a valuable human being, a unique individual and one of the best Bryan Adams imitators you will ever meet. He goes to school and he is learning job skills. He is the acolyte in popular demand at the Episcopal church we attend. Does he like what he sees in the mirror? You bet he does. And that's why these prenatal tests have me worried. To not know August would be a far greater tragedy. He is my son and I could not have asked for a finer human being. I look into his eyes and see the depth of my love for him and the trust he places in me, an equally fragile and vulnerable human being. He's much more than a prenatal test could suggest, no matter what a doctor recommends. ---

* CHRISTINE FRAIZER'S son has attended a school-to-work transition program of the Murray School District. Fraizer also writes for The Tribune's Closeup section.


jennifer said...

Yes. Yes, I will keep a good thought, and yes. I hope they choose "yes."

Jessica said...

They will be in my thoughts and prayers.

Mauzy said...

They chose YES!!! They live in PA so keep your eyes peeled for a new member soon!