Friday, September 5, 2008

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.

8 comments:

  1. Rebecca, thank you for those beautiful, tender words of truth and love. What a beautiful child you have! I have three other friends who were blessed with children with Down Syndrome. One was 21, one in her early thirties and the other had just turned 40 when these babies were born.

    I love your analogy and comparison. It reminds me of the scripture in Alma where Moroni and all his accomplishments are described, and then we are reminded that even though we may all play "less visible" roles, we are all just as serviceable as we fulfill our individual missions.

    ok...now I need to go blow my nose and dry my tears.

    Love the picture, btw...I just want to reach back at him and hug him and kiss his little neck. I think i could look at that picture all day!

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  2. Your little boy is DARLING! Beautiful words and beautiful boy.
    Thanks.

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  3. I hope what Sarah said will get through to those who really make those decisions, which are the congressmen/women. Someone once told a mom like you with a special needs child that Heavenly Father trusted only you. I believe that's true because He only trusted Mary to bring up His son.

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  4. Thank you so much for your comments and support.

    I just love that photo of him and I'm glad I could share it.

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  5. Wow,
    you are amazing. I can't get over how much you do. Awesome.

    Give your son a hug for me.

    Christine

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  6. Thank you for blessing the blogosphere with this post, Rebecca. What a sweet little guy!

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  7. I am grateful to be able to read your wonderful blog. Your son has a wonderful spirit and you are so blessed. Hopefully all you said about Sarah Palin will be so.
    Thank you again,
    Margaret

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  8. Way to go, Rebecca! Can't you get this out to a national readership? I love how "it's like Christmas every day with him." What a positive, life-affirming, wonderful blog!

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