Tuesday, March 20, 2012

Celebrating the Syndrome called Down

The positive response from "Perhaps you should sue God" was overwhelming- to put it lightly. So many of you shared how someone with a disability has brightened your life. So many of you have lived deeper lives of acceptance because you have somehow been impacted by this issue long before you ever read my blog post.

I could not be more thankful for all of you. To know that I'm not alone- that our voices are being heard- that worth is not being determined by a stereotypical view of perfection- your words of encouragement meant the world to me.

But there were a few who clearly did not agree.

At first the negative comments were hurtful as I pictured them staring at Addison's face saying these things. But after I allowed my immediate reaction to cool, I realized that they weren't being hateful or unkind on purpose

they simply didn't know.

They HAVEN'T had their worlds turned upside down with a diagnosis. They HAVEN'T experienced the joy of a little something different in their lives. They HAVEN'T been privileged to find joy and happiness in individuals whose existence bring deeper meaning to life and worth.
(obviously some-such as the couple in the last posts-find it possible to have it in their lives and STILL not allow themselves to find the joy and happiness- but as previously discussed, that is an entirely different matter)

Giving these commenters the benefit of the doubt, I realize that's one of the reasons that I'm here- to help wash away the mud of ignorance clouding the glasses of so many regarding this mysterious syndrome.

After trying to reply back to every comment, I soon gave up (because I have two children who were begging for attention...and I figured I should probably feed them.)

So I have picked out a few comments that I would like to address here:

Anonymous 1:
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.

I would ask what decade you're living in, but you clearly found your way to a source of internet, so that can't be the problem here. Individuals in the United States haven't been institutionalized for a VERY long time. I would say there are plenty other ways to insure a good future for your child without suing for her existence. And if you were unable to? That child will NOT be thrown into an institution. I repeat. NOT.

Anonymous 2:
 If you have ever had a child or other family member suffer needlessly or die due to a medical misdiagnosis then you would understand. They sued to make a point about a medical system we all rely on.

I took the liberty of enlarging the key part of this comment. Who is suffering? As I said in my last post, individuals with Down syndrome are NOT needlessly suffering. I'm a little sad that you didn't get that from my initial post (as that was the point), but I'll once again give you the benefit of the doubt and assume that you just haven't been lucky enough to be exposed to this truth before.

Anonymous 3:
To not peruse this would be negligent to the child's well being going forward.

I understand that children with DS need extra therapies and help throughout life (believe me, I live it every day). But there are actually quite a few programs who financially support all of these extras. In fact, by allowing that child to have a large sum of money in her name, she would no longer qualify for a lot of those programs. So then why is that money really necessary?

Anonymous 4:
And even a quick google will tell you that adopting children with special needs has it's own issues - people aren't falling all over themselves to take home a child with special needs!

If you were to broaden your sources beyond google, you would find that adopting a US baby with Down syndrome has quite a long waiting list. A lot of people actually would love to have a baby with Down syndrome. I lie not.

Anonymous 5:
Children are born with problems that could have been prevented if not for the mistakes made.

The "problem" of Down syndrome could not be prevented if it had been addressed prenatally. There's not a shot or a surgery to make it all go away. Down syndrome isn't a disease- it's a special order design.

Anonymous 6:
If you were told you had a tumor, then had it tested & was told, "Don't worry, it's benign, we can leave it right there..." And you later found out someone misread their test or misplaced their slide & it turns out the tumor was actually cancerous...wouldn't you call that malpractice? This is no different.

When did it become OK to replace the word "tumor" with the word "baby"? Am I the only one who thinks there should be a more distinct difference between these?


The truth is, individuals with Down syndrome









writers; (pg 23)








seriously what more do you want?

Why are people STILL talking about institutions, comparing extra chromosomes to brain tumors and calling this SUFFERING?

If this is suffering- sign. me. up.

Educate yourself. Individuals with Down syndrome ARE PEOPLE just like you and me. There's a wide variety of achievement, but isn't that true with everybody?

Tomorrow is World Down Syndrome Day (3:21 representing where that extra chromosome is found).

Would you join me in celebrating these too-often-overlooked individuals?

We don't need to fix the world's faulty stereotypes (or families not willing to let this positively change them)
 We're just resonsible for OUR response.

Difference isn't bad.

But deliberately continuing in ignorance is.
Happy World Down Syndrome Day.

19 comments:

  1. I am constantly amazed at how uninformed and uneducated people are.

    And YES - people ARE 'falling all over themselves (what the heck does that mean?!) to adopt a child with special needs'!!!! I'm one of them....read it & weep, people....

    www.homeiswhereitsat.blogspot.com

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  2. It is daunting to read the things that people think about Down syndrome. And for the record, I am one of those who would happily adopt a baby with Down syndrome. My husband and I have been talking about that lately.

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  3. LOVE, LOVE, LOVE!!!! I read through most of the comments last night and I'm so glad you wrote this post - those anonymous posters clearly did not do their homework before commenting! We don't have any suffering going on in our house either! :)

    Addison is looking more and more like you by the day....maybe it's just because she's looking so grown up?!

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  4. Wow! I can't believe some of the things people said! Addison is amazing, just like her mother! Thank you for showing the world how amazing people with Down Syndrome are!

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  5. Absolutely beautiful! I love this post!

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  6. Hmmmmm----I feel sorry for ANYBODY that has not had the honor and opportunity to have someone with a little something extra in their lives....whether it be an extra chromosome or something else. It is a true pleasure and if you haven't experienced it you have NO IDEA what you are missing out on!!!! Sometimes i think it is the rest of us that are different---they have something extra that we don't---maybe we are actually the "different" ones.
    Sunnie in NC

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  7. i am continuously amazed at people who see the facts staring right at them, and continue to go on in ignorance. people seem to like their opinions, and there will always be those who feel the need to back their viewpoints with misinformation. my favorite was the adoption remark...because it is amazing to me, with the hundreds...thousands of blogs and sites dedicated to just that...Reeces Rainbow who has been on the national news with just such adoption stories RECENTLY...that people can still think these children are not loved or wanted. there are people lining up not just to adopt these children in the US but over seas as well...and i hope one day to be one of them! why: because what i thought would be my worst nightmare, ended up to be my greatest blessing...and i would do it all over again...and again. unfortunately most people won't understand this concept, and continue to tell themselves that we as the parents are lying to ourselves...but i am ever so thankful for the few, who have seen the beauty in this life on their own. keep up the good work Deanna! and addison is getting cuter every single day!

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  8. Wow - those comments! I'm glad you addressed them!
    My son, he has something entirely different, it's very rare, but it comes down to an issue in one chromosome as well. I guess they would say the same things about him. (The joy of my life.) What he has can't be found on any prenatal testing - but it wouldn't matter, we declined those tests anyway. My husband and I knew that healthy or "limited edition" we would have the baby meant for us.
    People often pity us - which is just baffling. The extra care is a little harder yes! What we get in return? Indescribable. We're the lucky ones. Simple as that.

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  9. Can I just tell you how much I love your blog? My son is now six weeks old, and we didn't know he had Down syndrome until he was born. So for the past six weeks, I have been learning everything I can about Down syndrome--in between falling hopelessly in love with my little baby boy. Your blog makes me laugh and cry and feel good about life in general. I love it--and your kids are absolutely precious! Thanks for keeping this blog--you make a difference!!

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  10. I love Addison's pigtails. Because really, what little girl ISN'T made cuter with pigtails?
    -Molly

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  11. Did someone really just compare a completely sweet and perfect baby to cancer?!

    wow.

    And my husband and I are among the ranks of those about to adopt a SN baby (not downs, in our case)

    Keep writing, D. People need to hear what you have to say!

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  12. I am so proud of you for addressing the Anonymouses (don't you love that?). And #5 is exactly why I chose not to have certain tests done when I was pregnant with Millie. I told the doctor I only wanted tests for things that would need treatment or could be helped with early intervention. Having an abortion because of any other 'issue' was absolutely not an option to me- I loved that child so much and I hadn't even met her yet.

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  13. Beautiful. I just wanted to share one more experience that I had as a special ed. teacher that supports everything you have said:

    I worked at a special needs school for students with brain injuries. One of my students, a 16-year-old teen who had a brain tumor at age 14, was a sweet young man but was quite limited cognitively. His mom wanted him to transition back to his high school (into the sp. needs classroom). We, his teachers, were very concerned about this transition; we were worried that he would be teased or would not get enough support in a public school setting.

    A couple of weeks after his move back to his old public school, we met with his new teachers. They said he was doing great, mostly because another student in the classroom -- a young teen girl with Downs -- had taken him "under her wing" for support and friendship!

    She walked him to the cafeteria at lunch, helped him with work and the daily schedule, and made sure he got on the right bus each afternoon. She was his angel, and he was so fortunate to have her looking out for him. I felt so much better knowing there was someone looking out for this young man I cared so much for.

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  14. I think I loved this post even more than the original one!! Everything you said in here was perfect!! Thank you Deanna for being such a strong voice for all of us :)

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  15. I've been reading your blog since before you had Carter, but never commented before. I had to comment today to say that I am so glad you wrote this post, and those before it. I can't believe the ignorant comments you received, but this post totally refutes all their insane, prejudiced notions.
    I love your kids and I love your blog!

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  16. Hi Deanna,
    I hope it is okay but I posted on anothers blog about your great post the other day. They are having a giveaway for Signing time videos at muncksquiver.blogspot.com Of course I thought of Addison. :) Maybe she needs spares? :) I also mentioned Addison in my post tonight. :) I wanted to mention her as we raise awareness for DS and she has taught us SO much in her short two years. We love you ADDISON!!!

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  17. I have just run accross your wonderful blog via a mutual friend's facebook page. Haven't yet read the previous article that you refer to, but as we say in Québec... "BRAVO"!

    Good Stuff!

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