Sunday, October 28, 2007

Memorable moments*

Memorable things said to us by others upon learning that Ian has Down syndrome:

  • "I knew a little girl who had Down syndrome. She died when she was three."
  • "My next door neighbor's daughter has Down syndrome; she's nearly blind."
  • "I should have prayed for you harder before Ian was born."
  • "I wonder if he'll grow up to be the next Rain man? (in reference to the savant with autism in the Dustin Hoffman film) "
  • "Satan, I know you're listening! You keep away from Ian!" (prayer)
  • "Isn't God so wise? That He designed it so children with Down syndrome will have medical issues so the parents don't just focus on the Down syndrome, but on things like heart problems, digestive issues, etc.?"
*All of these things were said in earnestness and with compassion; I try to see the heart, knowing that words only can express so much. But I wanted to get these down so as not to forget what it felt like in those early days.

22 comments:

jon p. said...

anybody pray yet for a "hedge of protection"?

amber said...

WOW!
So sorry you guys have had to hear those awful things. Just stay away from stupid people...sorry... very upsetting.

God is Great Beauty Salon said...

You've got to be joking! That's some nasty stuff! Sorry...

When people say horrible things like that, I try to remember to pitty them, (for not having a clue, for being idiots etc), instead of getting angry.
Although I do not always succeed, and I'm sure you didn't either.

bella said...

holy shit we as a human people are amazingly inventive in our ways of coping. these words from others are so mind boggling in their basic insensitivity, lack of tact, ignorance. And they are not about you, not at all. They are things that others are saying TO THEMSELVES so they can pretend that THEY are ok/safe/won't happen to me/ect. . .

it sucks. it's hard to hold the positive intention.

sometimes you just have to stand there, say nothing, and turn around and walk away.

RK said...

That's some list...we had quite a few similar things. It's amazing what someone will say in the face of something they don't know anything about.

Jeff said...

I think unless you have been through it, you don't know what to say and can't relate. We are finding it hard to have "typical" kid type conversations with our friends due to our "atypical" experience. Thanks for finding us.

Karen said...

We still get idiotic comments like that every now and then (thankfully not often). Once someone even prayed for Ben's arm to grow back! I might blog about that one day too.

Emily said...

Gack!! I hear you though, we have had our fair share of insensitive comments.

Like when my daughter was 2 days old and the nursery nurse said, "I was so worried about this happening to me because I was 39 when my child was born, but thank God she was completely normal, there is no way I could have handled a "Down's baby". Okay, I was only 30, so what was I, cursed? Thanks alot for kicking me in the gut when I was at my lowest.

Sometimes people suck.

Archie said...

Oh my.
Clueless and ignorant sound like mean words, but stuff like this seems to come out when people literally have no clue or just don't know...
Memorable is a much nicer word.

Kim Ayres said...

Oh sweet! What a superb collection! You could almost turn them into bumper stickers.

I wonder if you could take the one who should have prayed harder to court and sue him/her for dereliction of duty...

Carole said...

The first comment you got was one I frequently heard when my granddaughter was born. I am often curious about why people think that is appropriate. Perhaps when words come out of their mouths, their ears automatically close. I do know their brains and sense of common decency shut down.

Elbog said...

I'm so glad that you are both recording these for others, and for yourself. Time will change your perspective on some of them, but they are worth remembering. The Psychiatrist, Director of Mental Health Services at the hospital where I work's first reaction to me was, a day after Emma was born, "Didn't you have an amnio?"
My first thought upon reading this post was voiced by Obi-Wan: "You are being tested, young Skywalker. . . "
I'm encouraged by your wisdom, so early on your journey.

Tom said...

Jon: No "hedge" yet, but am waiting for the "faith to move mountains" prayer.

Amber: Some people haven't got a clue.

GIGBS: I pity them, then I slash their tires in the parking lot.

Isabel: That's kind of what I thought, too, as I listened to them say their comments. ...your mouth shut and be thought a fool than to open it and remove all doubt... sort of thing.

RK: I'm sure that, unfortunately, it is list that will only grow with time.

Jeff: Good to see you on Facebook. I like watching people's expression change as they slowly realize that instead of cooing at a "normal" baby they are instead looking at a creature from another planet.

Karen: Yikes! I'll look for that blog posting...

Emily: Don't nurses take classes on bedside manners anymore? I'll have to ask my Aunt Bonnie...

Archie: I used the word "memorable" because my mom is apt to pop in from time to time. (Hi Mom!) Otherwise...

Kim: I'll put those bumper stickers right next to my "Dead Baby" jokes bumper sticker...

Carole: I once happened on a car accident scene where the husband was unconscious and the wife was injured, sitting nearby. A trucker who had stopped said in a loud voice, within earshot of the worried wife, "Well, he's a goner! No way he'll ever make it!"

Elbog: Wisdom, I seek. Patience, I lack. (Yoda)

Anonymous said...

Aww yes, I could possibly write a book on "memorable moments" We get the double whammy not only do we get "memorable" ds comments but, we also adopted our son so, you wouldn't believe some of the comments we have heard, a couple of my favorites (do you hear the sarcasm :) ) At the Mayo clinic when my son was only months old, we had records with his birth last name and his new last name, this was really confusing the nurse... so, we explained that we were in the process of adopting our son, and she said "Oh, how nice, yes, these downs kids are so trainable" Umm excuse me we didn't adopt a puppy, this is my baby!!!! And when my son was around 2 my mother inlaw asked if I had heard from his mom lately???? (we have an open adoption) Umm excuse me, I am THE MOM!!! I do believe people truly mean well, and unfortunetly I have probably without knowing sometime in my life have said something to make someone elses "Memorable moments" book!!! On a positive note today I went into my son's 2nd grade class and read "WE'll paint the octopus red" (great ds childrens book!!!!) and then talked with his class about ds.. The kids were sooo WONDERFUL and had great questions....made me feel like, maybe in the future we wont hear so many "memorable comments" sorry this got so long, I love your blogs they are all very thought provoking and love your humor!!! Monica

rylie's mom said...

the worst comment I heard-This guy was working on my roof and when he saw my daughter he said-I have a cousin who just had a kid w/ Down syndrome-She must have drank to much alcohol during her pregnancy! It drives me crazy that people are so uneducated that they think we did something to cause the Down syndrome.

Tom said...

Monica: I'm glad to know that "Down's children are so trainable." :) Whew! And here I thought it was going to be so hard teaching Ian to fetch.

Glad the kids in the class participated so well...

Rylie's Mom: You could have yelled back, "I only drank lite beer." That probably would have confounded him for a week or two.

Sorry about that...

Dylan, Jonah, and Mom said...

My personal favorite..."Oh! An Angel Baby".

Sorry that you are experiencing what I call 'extreme educational opportunities'...that is, when I'm in the mood for it. But most of the time I'm trying very hard not to curse that person out right on the spot. Then I have to go home and look up Ephesians 4:29-32 when I fail.

Take care. I recommend memorizing the Ephesians verse. It helps save time.

Kristy

Nicole said...

Tom,
thanks for visiting my blog today, funny that we were blogging about the same idiocy.

I'm wondering about the hedge of protection, because I pray that over all of my daughters. Why would that be offensive?

See even some of us walking this path don't completely understand each other. lol

I'm glad you are already able to try to see their heart and intentions, that one took me awhile to learn.

Tom said...

Kristy: I'll look it up (Eph.) I haven't got the "angel baby" one yet; now I know to be on the lookout...

Nicole: I replied on your site... thanks for popping in and sharing

Tricia said...

Holy moly. We have heard some doozies...but these definitely take the cake!

Tom said...

Tricia: I'm hoping that it's just not me that people are saying these things to, because if so, I've got to re-evaluate my people skills...

Jeff said...

Tom

Great post and use them to thicken the skin. People never cease to amaze me....

Be cool.