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.