Thursday, November 6, 2008

My Son, My Gift

You may not agree with her politics, but Sarah Palin and her son, Trig, have raised awareness about Down syndrome, the most common chromosomal abnormality named after Dr. John Langdon Down who first recognized common characteristics and termed it as a condition. Did Sarah Palin’s candidacy combat some of the common misconceptions about Down syndrome and help people to better empathize with the 350,000 Americans diagnosed with it, and their families? Time will tell.

Each year about 5000 babies are born with an extra 21st chromosome. Shortly after fertilization, an egg 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. This extra genetic material affects individuals in various ways and much is still unknown about which genes are actually replicated. The chance of it happening increases with maternal age. However, most births are to women under age 35.

An article, “Prenatal Test Puts Down Syndrome in Hard Focus,” by Amy Harmon in the New York Times, May 9, 2007, cites research that 90 percent of all women who receive a pre-natal diagnosis of Down syndrome choose to terminate the pregnancy. 90 percent. Why? I believe it’s because there are still so many misconceptions about Down syndrome. After the announcement of Sarah Palin’s candidacy, a commenter on a blog blamed Palin for causing her son’s 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.

People erroneously believe that children with Down syndrome cannot be educated. I personally know a student with DS who was on the honor roll at our middle school.
Another misconception is that people with DS all function similarly and can only do certain things. People like to place them in a “box” and only have certain expectations for them. Again, I know of a woman with DS who works on the Olympic Committee and Chris Burke starred in the television series Life Goes On. People with DS play instruments, act in plays, sing, swim, and have talents like everyone else.

I’m hoping that Palin’s candidacy helped shed light on the truth about Down syndrome and discredited some of the long-held beliefs. I know I was completely ignorant when my son was diagnosed shortly after his birth. I expected him to be a blob. Was I ever wrong. He is most certainly not a blob. 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 has definite likes and dislikes. Though he’s generally happy, he can throw a tantrum just like any other two year old when he doesn’t get his way. 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 he has an audience. More often than not, when we’re in the grocery store he’s pulling faces at people to make them laugh.

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. He may never marry nor have children of his own, but I have yet to become the kind of wife and mother I should be. We all have our struggles, his may just be more apparent; though it’s likely his challenges 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 his mother. He inspires me to be a better person so that I can spend eternity with him in his immortal and perfected state. I can only hope that when that time comes, I will have been the kind of mother that will deserve to be with him.

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.

Did 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. After all, under the wrapping, we’re all the same to Heavenly Father.


COOLWHIP said...

I was 27 when I had Eva. I was definetly a "has to look perfect to be perfect" kind of person. I am no longer that way because of my gift. I needed her to move me from where I was stuck.
When I asked my dad "why would He give her to me?" He answered, Because He loves you. Those words still brings me great comfort when I remember them. And when eva was in the hosptal with PH an ASD pnumonia and numerous other problems, He told me over and over again, she came here knowing who she would be, and accepted it with a glad heart.
That is all I need. I don't care what others think of her, or what they think of my ability and desire to raise her. I know she is a gift, and I was blessed with her.

Iron_woman said...

Dear Rebecca,

In spite of our different opinion and views we’re still sister in Christ.

As fate would have it. We will be expecting our second baby. We just found out last month. Nothing can be sweeter than knowing that God is blessing us with another child.

Life, babies are a miracle! To tell you I am against in abortion. I like McCain but I got irritate with the mouth of Sarah Palin attacking other party. She said the "condescending attacks" about the job of Obama as community organizer are disappointing. I think Republican campaign made a terrible strategic mistake.

I work as community organizer in my country and is not easy. Community organizing is a very valuable thing.

When Sarah Palin demeaned community organizing, she didn’t attack another candidate. She attacked an American tradition…Like her “master,” she opens her mouth and inserts
her foot.

Thanks again for passing by and leave comments in my blog..

God bless…

*MARY* said...

There's a little primary boy in my ward with down syndrome, and he's the sweetest and smartest little boy I know. He's also fluent in both Chinese and English, how many people with the normal 46 chromosomes can say that?

Tom and Sarah Baker said...

Thanks for such a touching post, that is close to my heart.

Tulsi said...

We have moved many places because of my husband's professions. We have known many families with a DS baby or child. I loved these children. They do not judge. They love unconditionally. One child in one town loved Steve's uniform and he was loved alot when he was around. The older they get they do not loose that like many other children do when they have to decide what is and isn't cool. I loved your post.

stACEy said...

beautiful post! nice to 'meet you' and thanks for visiting my AI blog. LOVE your llama LOLOLOL

Christina said...

What a beautiful tribute to your special son. This is my first visit to your blog, but I was moved to tears by your "Extra C" video. Thanks for sharing!

Sheila said...

What a beautiful tribute to your son. I had a son that was stillborn at 35 weeks and he had Mosaic Trisomy 9; he would have been 9 this year. I always wonder how my life would have been different if he had lived. Some days I feel cheated that I didn't have the experience of raising this special son. I have to believe that Heavenly Father had things work out the way they were supposed to and our angel sons were given the choice to receive their bodies in the way they did. I hope that people will see these sweet children/people with trisomy 21, or tri 18, Tri 13 or Tri 9 as unique and beautiful.

Danyelle Ferguson said...

I have been privileged to work with and become friends with children and adults with all different abilities in the special needs world. I find myself with the same concerns for my son with autism. I've also found that people want to put him in a "box" and everyone needs to understand that with ANY diagnosis, there's a huge spectrum of functionality. I've met so many children, teens, and adults with disabilities who have taught me that no matter what their functioning level is - they are all children of God and they each have a wonderful, valuable life here on Earth.

Thank you for your awesome post!

Rebecca Talley said...

Thank you for your comments. I appreciate all of your visits to my blog and for your support.

Ronda Hinrichsen said...

I really enjoyed this, Rebecca. I have a nephew with Downs. I don't remember exactly how old he is, but he must be in his late twenties or possibly early thirties, and he is as sweet and loving and hardworking now as he was when he was little. You're right, we have to really work to maintain or reattain our goodness as we grow older, but those with the extra chromosome don't. Maybe that's what the other chromosome is--an extra helping of love.