Sunday, March 18, 2012

Why I wrote it and Why I almost didn't post it

Many people have asked me why I didn't want to post "Perhaps You Should Sue God".

The truth is, I was afraid.

I was afraid of being perceived as judgmental. I was afraid that perhaps my point wouldn't come across.

My desire was not to attack these parents or the many others who have gone through with similar lawsuits. Wanting to make a point to doctors who made a mistake can make sense under certain circumstances. I get that.

But as I saw the link to this lawsuit float around facebook, I became aware that this lawsuit was being used as an opportunity to magnify every preconceived flaw of Down syndrome a thousand fold for the world to see.

In order to win this case, these parents had to convince the jury that Down syndrome was a debilitating disease-that individuals with an extra chromosome were suffering- that an "imperfect" life was not worth living.

And I'm sorry, but that just isn't true.

In a world where around 90% of ds prenatal diagnosis terminate, a lawsuit like this combined with the new tests to find out even earlier screams a death sentence for those individuals whose only crime is being different.

So while I wanted to sit back in my little corner and keep my opinion of this particular case to myself, I realized that I had to say something about how Down syndrome was being perceived because of the popularity of this story.

I never predicted that so many people would read my humble words.

And yes, I have been called judgmental.

But if I can show the life of one of the many people with Down syndrome living a happy, full life; brightening the world in a unique way; teaching us about overcoming challenges; showing us what unconditional love looks like; deepening respect for all- then it's OK.

Sometimes the things we fear are just the challenges set in front of us designed to make us better versions of ourselves. Change can hurt. Fear can be debilitating.

But Down syndrome is not.

And that's why I clicked "Publish Post"

in a small attempt to defend those unborn designer babies who can't yet speak for themselves.
Like peanut butter on the fingers of a curious toddler, this post is begging to be shared.

26 comments:

teal915 said...

I thought it was great. And I even saw someone else on facebook post it, so I know your post got around.

SWATCHUSA said...

as always ... well said Deanna

chambanachik said...

I don't think it's judgmental. I actually felt a lot of anger when I first read about those parents. Because, no matter what- Down syndrome, deafness, speech impediments, autism, developmental delays, only one arm,, or anything else...it's your baby. It's your precious baby that is alive, and for that alone, you have to be grateful.

Martha said...

getting a hug this morning from the little jewel with Down syndrome in my life certainly brightened my day! I am blessed to have the privilege of interacting with one of the 10% who survive to challenge the rest of us who are missing that extra chromosome...

Patti said...

amen. you go girl !

Jenni said...

I don't usually comment on here, but I read almost every post and I'm thankful for you, Deanna! I love seeing your precious children and hearing your love for them! I know I am not at Trinity often; but when I am back, Addison brings a smile to my face and joy to my heart! Thank you for posting, I know your blog has challenged me and I hope it continues to share joy and truth!

Anonymous said...

I don't think the parents sued because they don't love their child. I'm betting that they sued because the physician gave them the wrong diagnosis, which is a valid reason for a lawsuit. Perhaps it is their love for their child that prompted them to sue. Going through a lawsuit is no easy task! Maybe it was their way to ensure that their child would be financially secure for the rest of his or her life and wouldn't end-up in a state run institution (which are all riddled with abuse) I'd sue too if it meant sparing my child being institutionalized.

Jenny said...

Well, perhaps I will be called judgmental but I have to question the love a parent has for their child and how strong that love is when they SCREAM to the world that if they could go back in time and if they had known she would have Down syndrome they would have ABORTED her!! You know, but we love you honey...Ya right!

Oh and believe it or not, there a millions of parents who have children with Down syndrome who do not need to sue to help support their child and the expenses that come with raising them...So the money thing is just bullshit!

Phil Dzialo said...

You are not judgmental, and if you were so what? A wrongful birth suit communicates that people with disabilities have lives not worthy of life itself. I have little problem with abortion of a fetus; I do have a monumental problem with the abortion of a fetus because of a prenatal screen for a genetic issue or because the fetus is of a particular gender as in China. Selective abortion is akin to eugenics. I am judgmental about selective abortion based upon prenatal testing or preimplantation techniques. I recently wrote a very judgmental blog about selective abortion last month. If interested it's:
http://healingandempowerment.blogspot.com/2012/02/designer-childrenselective-abortion-and.html

Katie said...

I LOVED your post, and posted a link to it on my own blog. I have a little boy with a very rare chromosome disorder (1 of 2 known in the world). I think your statement above could easily apply to all of those who are unique-- that they are "living a happy, full life; brightening the world in a unique way; teaching us about overcoming challenges; showing us what unconditional love looks like; deepening respect for all". Your post was perfect and I thank you for your words!

Anonymous said...

Yet another honest, from the heart post that speaks nothing but the truth. Keep it up.

Mike Sullivan said...

It was a great post. People often confuse judgement. It is appropriate to speak out against wrong action. Judging a person is different. You got it right - thanks for being a voice.

Patti said...

"I'd sue too if it meant sparing my child being institutionalized"

Excuse me? What decade are you living in? Or perhaps I should ask what country? Maybe take the time to educate yourself on raising a child with Down syndrome in the 21st century before leaving a comment like that.

jdt_1583 said...

I thought it was a very well written post. I think everyone is guilty of being judgemental sometimes but these parents have made it difficult to like them. They flat out said they would have aborted her. They did not say we would have prepared ourselves better or tried to find out more information about Down Syndrome, but we would have just killed her. I just dont have any sympathy for them.

Anonymous said...

I think those parents should read Angel Unaware by Dale Evans Rogers. Everyone connected with DS should read it.

Anonymous said...

I just posted about Angel Unaware by Dale Evans Rogers. It was written in 1953 when DS children were hidden away and not seen in public. then Roy Rogers and Dale Evans Rogers had a baby girl named Robin Elizabeth who was DS. Even though she only lived for 2 years she blessed their lives tremendously. Robin tells of her 2 year mission in this book. all of you will really love it. I hope you read it.

Nikki said...

I loved it Deanna!!!!We thought it was a very well written post. I think about the people who wait in line a long time for a special child like this.

Maria said...

I prefer to think that they sued just because of the money and had they known her before , they wouldn't have thought of killing their daughter. If they still regret not having aborted her I don't know how they can look at her every day.

Rachel Douglas said...

Well I am so glad for people who speak out. We too are allowed our opinions. The issue is the devaluation of the person with Down syndrome all for money. The fact that people still think a person with Ds goes to an institution to live or is a burden to society is the fault of our support groups. "We"need to hire a PR firm because obviously their campaigns are just preaching to the choir and the general public doesn't know that most people with Ds lead very productive lives, pay taxes, go to college, participate in society. I posted much of the same but my lawsuit was directed to the Levy's and others who cause us such stress. Www.worshurtorheal.blogspot.com I say let's stick together and get our message out in a BIG way. My child has a economic equation but not a respectful equation and that needs to change.

Rachel Douglas said...

http://wordshurtorheal.blogspot.com/2012/03/shouid-i-sue-levy-family.html
Better link.

Anonymous said...

speaking the truth is not being judgemental ..the fact that you know from experience what a blessing your child is gives you a responsability to speak up. I worked at a preschool for many years and one of the biggest blessing was my friend Alexandra who was bright and happy and smart and also had Down Syndrome. Alli taught me to love better she was the reason I learned sign language (not very well but enough to communicate with her) and she showed everyone that she was no different than the rest of us...not perfect but Loved by Christ..Alli didnt know it but she helped prepare me for the birth of the biggest blessing in my life ...my grandson Ezekiel born profoundly deaf...so please continue to be the voice of your daughter and the many others in this world like her...blessings from a loving GOD!

Denise Mom of 4 Amazing Kids said...

As always it was very well put, I can't think of a better person to be our voice! Our little cutties need our voice, our protection, and our love. I think in a year when they have their baby they will look back and wonder "why did we do this"? I am totally Pro-Life if we choose to be adults to create the baby we have to choose to be adults and care for our babies. Thanks so much for speaking the words that needed to be spoke!!

Susan Hill said...

"Sometimes the things we fear are just the challenges set in front of us designed to make us better versions of ourselves."

Wow. What a statement. And so true. {although not so easy} Thank you for posting this!

Jackie said...

I read your blog just about every day and thought you answered the negative comments very well and I find it interesting from reading their comments that they even read your blog. I admire you and your courage as you face each new challenge and I feel that God has truly blessed you and your little girl! Hang in there you are loved!

Anonymous said...

Judgemental or not you have courageously put into words what many of us felt about this story! I was outraged when I first read about it! Having lost a baby at 4 1/2 months I couldn't imagine any parent flat out saying they would have aborted...but then again some people shouldn't have kids! Thank you for being our voice!

shayneswife said...

I really don't get the "institutionalized" comment. Anonymous has an agenda as either a troll or something worse. This looks like a blog to support the DS community. What did anonymous expect you to post? The Levy's are sad people and they will be sorry when their daughter can read. Why not give her up for adoption to someone who sees her worth? And, I believe there is a waiting list for people to adopt domestically - babies with DS. Sorry for the rant but you don't need to apologize for posting anything. Its your blog! And it is well written.

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