Monthly Archives: August 2008

Every Person, Every Life, Has Value

I have always debated posting political thoughts here, and usually save those for my Facebook page which is generally only viewed by close family and friends, but after reading this article, I was touched enough to post about it here. This blog is, after all, a blog about raising a child with a disability–more specifically a child with a genetic difference.

Politically, I identify myself as a Libertarian. I think federal government should be small, more state-centered, debt-free and that constitutional rights should be steadfastly defended. However, in this election, I am unable to vote for the Libertarian candidate because I believe a vote for a non-viable candidate is a vote for Obama, a man I consider a socialist and a marxist. He is a radical leftist who will lead this country to economic destruction, leave our gas tanks at the mercy of environmental extremists and leave us at the feet of terrorists around the world who are gleefully anticipating his election. At the risk of sounding glib, I consider him the second coming of Jimmy Carter. I remember the economic destruction of the 70s and early 80s far too well being an Iowa girl.

Obama believes government is the solution to all of society’s ills, even though he himself, and his family, made it quite well in this mean, evil country, without much help from the government. In the Obama’s convention speeches each bragged about how their families sacrificed and worked hard, despite hardship so their children could achieve something better in the world. They even sent their children to Ivy League colleges. The Obamas have amassed great wealth as a result. Hmmm….hard work and responsibility can help one’s family achieve the American dream? Really? Out of the other sides of their mouths they declared it impossible to achieve the American dream without a nanny state. So which is it Senator & Mrs. Obama? They’ve declared American broken and soulless, but America sure has been good to them. And they made their achievements under a government that was largely led by conservatives. The hypocrisy is rampant.

McCain is too left leaning for me as well, but I’ve reluctantly felt I must hold my nose and pull the lever for him. He’s the lesser “left” of the two evils.

But then Sarah Palin came along as McCain’s running mate. She is the mother of a child with Down Syndrome. A child she felt was “perfect” from the beginning, even with an extra chromosome. A child she chose to have because she knew early in her pregnancy he would have Down Syndrome. It is believed that up to 90% of babies with Down Syndrome are aborted. This is a widely practiced and acceptable form of eugenics, and as the author of the article I linked to above says “a sign we are becoming a culture of death”. We are sadly a culture that does not value people who are deemed less than “perfect”…genetically, physically, or intellectually. It even shows in our language (see my Tropic Thunder opinions).

At least we know that when it comes to pro-life issues, Sarah Palin walks the walk. Whether she wants to be or not, I consider her a member of the same sisterhood I belong to. If McCain and Palin win in November, I feel Baylee and mothers like me will have an advocate in the White House.

Obama touts himself as the man who will stand for the people with ethnic, religious and cultural differences, but he won’t stand for those who have genetic differences. It’s above his pay grade.

Even though my intention was to always vote for McCain, let’s just say I won’t be holding my nose anymore when I go to pull the lever for him and Gov. Palin.

Every person, every life, has value.

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Filed under Everyday stuff

PhotoHunt Saturday

I decided to play along with PhotoHunt Saturday. A theme is given each Saturday at tnchick.com and the participants post a photo that best fits that theme. I love photography and I like to raise awareness of CdLS, so I couldn’t resist joining in on this blog challenge. It’s a great blog, and you should definitely add it to your reader.

Today’s theme is “Beautiful”. I think Baylee’s photo works great for this theme and this picture shows her beautiful spirit.

Beautiful

Beautiful

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Filed under Cornelia de Lange Syndrome, PhotoHunt Saturday

Special Exposure/Wordless Wednesday

5 Minutes for Special Needs

Baylee at Cornhusker Marching Band Exhibition

Baylee at Cornhusker Marching Band Exhibition

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Filed under Cornelia de Lange Syndrome, Special Exposure/Wordless Wednesday

Good bye summer

School started Wednesday and the pool closed Tuesday. We are going on day 5 of no pool. As you might know from reading our blog, Baylee LOVES to swim. We go to the neighborhood pool nearly every day in the summer. It’s a fabulous way for Baylee to burn off her endless energy and she behaves better after exercise.

Unfortunately, she’s been asking to go to the pool every five minutes. As she gets off the bus she asks “Pool? Pool?”.

Today we took her to the pool to show her that it is empty and deserted. Can you see the sad look in her eyes? It’s almost heartbreaking.

A new YMCA is opening in our neighborhood, but it won’t be open until next fall. We plan to join it so Baylee can have access to a real pool year round, but it’s going to be a long wait!

We did try to give her a water substitute today. We filled up her pool and hooked up the water mister. It wasn’t the same, but once Colton got in the pool and played with her, she seemed to warm up to it. Photos are on Flickr.

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Filed under Cornelia de Lange Syndrome

Special Exposure/Wordless Wednesday

First Day of School 8/20/08

First Day of School 8/20/08

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Filed under Cornelia de Lange Syndrome, special exposure Wednesday

Baylee loves soap part 2

I should probably leave this photo for Wordless Wednesday, but I suppose I’ll share it now. I can either laugh about it or cry. Baylee dumped a brand new bottle of dish soap on the kitchen floor, then started smearing it everywhere. Did you know massive quantities of dish soap concentrate take forever to mop up? Good thing I got a good deal on Palmolive today. It was on sale AND I had a coupon! I love Palmolive because it smells so nice, but I don’t usually spring for it unless it’s cheaper than the Hy-Vee brand dish soap. Good thing I sprang for it today because it sure smells good in our house! Yes, I’m trying to find something positive about this mess. Don’t let the peaceful look on Dave’s face fool you. He was NOT amused. Not to mention he walked into the kitchen and discovered the mess by almost falling on his rear and breaking his OTHER ankle.

You probably can’t tell from the small photo, but he’s wearing his “Ask Me About People With Cornelia de Lange Syndrome” shirt. If you asked him about people with CdLS right now, I doubt he’d say anything nice. Ask him later when Baylee’s his little princess again. Tonight she’s on his “list”.

Soap disaster courtesy of Baylee

Soap disaster courtesy of Baylee

More soap

More soap

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Filed under Cornelia de Lange Syndrome

CdLS-KIDS Blog Challenge




Visiting Great Grandma Mabel

Originally uploaded by baysmom3

Our blog challenge this week is to write about a special memory you have about your child with CdLS and another family member.

I’m 40-something, but I have a Grandma that is still living. She’s 89 and lives in a nursing home. My Grandpa died about 18 months ago, so she’s been lonely and I think she’s giving up.

In June, after conference, we were able to go visit her. I was touched at how Baylee was so interested in Grandma and how she gently took her hand and held it. This is a girl who doesn’t like touching or hugging. She engages people, but always from arm’s length and hardly ever lets strangers touch her. We rarely get to visit my Grandma, so really she’s a stranger to Baylee for the most part. Somehow Baylee knew Grandma was a person special to her and reached out in a way that was uncharacteristic of her.

Unfortunately, the nursing home doesn’t have a lot of places for people to sit and visit, so it’s difficult to spend time with her. We weren’t able to stay long, but I’ll never forget how Baylee interacted with my Grandma. Baylee really does have a way of tuning in on people who are lonely or seem sad. She’s very receptive to the feelings of others and shows a lot of empathy. It’s definitely one of Baylee’s most special qualities. I’m glad I got to see it with my Grandma.

Hopefully we’ll get to visit again soon. I know our time with Grandma is short.

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Filed under CdLS-KIDS Blog Challenges, Cornelia de Lange Syndrome