New Down Syndrome Website

by Rebecca Talley

For those of you who've read my personal blog before you know that I have a son with Down syndrome. It doesn't bother me at all that he has an extra chromosome. He's absolutely adorable, he's healthy, and he's full of fun and life. I've known for years he was coming to my family, though I didn't know he'd have DS. But, I knew he'd be coming at some point. I have no doubt at all that he was meant to be in my family and every day I am so grateful for him, just as I am so grateful for each of my children.

What does bother me about DS is the attitude of others. When my grandfather (who is now deceased) found out a friend of mine was having a child with DS he said, "Can she get rid of it?" (translation: can she abort the baby so she doesn't have to be bothered with it?). For whatever reason, our society seems to think that unless you're perfect, you don't matter. The fallacy in that line of thought is that no one is perfect. We all have struggles and we all have problems. Is it worse to not read at grade level or to throw away an education? Is it worse to not understand sarcasm or to give it so freely no one knows when you're serious? Is it worse to love everyone regardless or to only choose a few select individuals to love?

In the eternal scheme of things, who's really handicapped?

In an effort to change some attitudes and maybe, just maybe, make the world a little better place for my son and the 350,000 Americans (with 5000 more babies born each year) with DS, I've created a new website. I want to show the world that having a child with DS is an honor and a privilege and, in reality, isn't much different than having other children.

The website address is www.downsyndromeassociation.org.

My hope is to turn it into a much larger site complete with a forum so people can come to a safe place (no judging allowed) and ask questions. I'm still working on that aspect, but for now I'd appreciate any input or comments to help me improve it. And, please, pass the link to anyone that might be interested.

Thank you for helping me to change one attitude at a time :).

Down Syndrome Awareness

By Rebecca Talley

In celebration of the National Down Syndrome Awareness Month I have created this video, Extra C. Please help me spread the message that every child is a gift, even if the wrapping is a little different.

The music was composed and played by C.S. Bezas, an incredibly talented and creative musician. Please visit her website www.csbezasmusic.com to hear more of her beautiful music.

As a thank you to all who spread this message and share this video, I will sponsor a contest and give away a copy of my book, Heaven Scent, to the winner.

In order to qualify for the contest you can post this video on your website and/or blog and/or make a comment on this video at YouTube and/or pass this link http://www.youtube.com/watch?v=nGO5wqldyAo to people on your email lists. Just leave a comment on this post, or email me, and let me know what you did to help spread this message and I'll enter you into the drawing. The contest will run until midnight October 24th.
On October 25th one of my kids will draw a name from those that qualify and you'll receive a signed copy of my book.

Thank you for helping me to change attitudes about Down syndrome. Enjoy the video.

Sarah Palin and Down Syndrome

By Rebecca Talley

This is not a political post. Rather it is an examination of what Sarah Palin’s candidacy may mean for the 350,000 Americans who have been diagnosed with Down syndrome, and their families.

Each year about 5000 babies are born with an extra 21st chromosome. Shortly after an egg is fertilized, it begins to divide and change. Normally, each person has 23 pairs of chromosomes resulting in a total of 46. Individuals receive one chromosome per pair from the father and one from the mother. In the case of Trisomy 21, or Down syndrome, a developing egg may have divided incorrectly or something else caused it to receive extra genetic material on the 21st chromosome. The result is 47 chromosomes instead of the normal 46. How this extra genetic material affects people can vary greatly and much is still unknown about what genes are actually replicated. It is the most common chromosomal abnormality and the chance of it happening increases with maternal age. However, most births are to women under age 35.

A statistic that I personally find appalling is that 90% of all women whose babies are diagnosed with Down syndrome choose to abort that baby. 90%. Why? I believe it is because there are still so many misconceptions about Down syndrome. After the announcement of Sarah Palin’s candidacy, one such commenter blamed Palin for causing her son to have Down syndrome because she didn’t receive adequate pre-natal care. DS is a genetic condition and has nothing to do with pre-natal care, yet this misconception survives.

I’m hoping that Palin’s candidacy will shed light on the truth about Down syndrome. I know I was completely ignorant when my son was born. I expected him to be a blob. I was so wrong. He is so not a blob (some days, though, I wish he would be a blob for just a few minutes). He constantly keeps me chasing after him and trying to stay a step ahead of him, though I always seem to be two steps behind him.

He has his own distinct personality and knows what he likes and doesn’t like. He’s a tease and loves to torture his older sister. He loves to “play” the piano and as soon as he hears the pianist begin at church, he raises his hand to “lead” the music. He performs for anyone who will watch. His favorite song is “The Wheels on the Bus” and he will do the actions, always making sure we’re watching him.

Will he have challenges? Honestly, I don’t know. In a sense, don’t we all have challenges? He may have to work harder to learn to read, but I don’t always understand, nor can I recall, what I’ve read in my scriptures and need to constantly reread and supplement my scripture study. He may have challenges expressing his feelings, but after all these years, I express my feelings far too frequently because I still haven’t learned to be patient. He doesn’t say many words, but I sure have to work hard to bridle my tongue especially when I think someone deserves a good tongue lashing. He might not understand his own needs or the needs of someone else, but I rarely think about others’ feelings because I’m not very compassionate. We all have our struggles, his may just be more apparent; though it’s likely his struggles won’t keep him out of the celestial kingdom while mine will.

I often wonder why Heavenly Father chose me to raise such a son. I feel so unworthy to be blessed with this child. It’s like Christmas every day with him, he’s a gift I can enjoy repeatedly. Of course, all children are gifts, but the world seems to shun that gift when it’s wrapped a little differently.

Will Sarah Palin change attitudes? I hope so. The world needs to realize that every life matters, every person deserves a right to live, and every child deserves respect even if he or she has an extra chromosome.