Wednesday, July 22, 2009


I was talking to a friend of mine whose sister has a 13-year-old daughter with Down's Syndrome. "You two should sit down together, you are both talking about the same things, how hard this passage is, and how most people just don't get it."

Apparently my friend's sister, we'll call her J., was being praised by a born-again Catholic. He was extolling her virtues. "I'm so proud of your decision to go ahead with a pregnancy in which you knew you were carrying a Down's Syndrome child." Blah, blah, blah he went on, and as he did, J.'s temperature rose. Unable to contain it one more minute she said, "Make no mistake, I am pro-choice. We knew that no matter WHAT we decided, our lives would never be the same. We made the choice we felt WE could best live with, but it's a hard choice. Everything about this is hard. You have no idea HOW hard it is."

And on her good days J. can tell you how much she has learned from raising her special needs daughter, how she's a better person, how she views the world differently, and how her other children will know a kind of compassion and understanding beyond their years.

And on her bad days she will tell you how embarrassing it can be. How taking her daughter into new and unfamiliar situations can drive her to drink, how tired she is of the "toddler years," and how there are days she begs of God, why me?

You see, we special needs parents are just humans, not heroes.

The next time you see one of us struggling with, or enjoying the hell out of our special needs child(ren) in public, smile, and give us our humanity.

Thank you.

(Photo of STM and Rojo looking for drinking fountains. Again.)


Anonymous said...

I had this conversation with a "Christian" once too. I wouldn't consider having an abortion, even knowing what I know about Katie, because it's not right for me. But I am still pro-choice and believe every woman has the right to choose.

Today is a bad day for Katie. A new caregiver, a woman with experience with behavioral problems and Katie ran her off. Or maybe that's a good day for Katie.

Katie was in fine form this morning. We came home to find shattered glass on the floor, picture frames everywhere, pee covered clothes on the floor and both Katie and the caregiver had a wild look in their eye. Fuck, this girl is going to be the death of me.

Anonymous said...

you're still my hero

but that's not why

THIS is why


Jenny said...

Carrie, have you read What I Thought I Knew? It's a new memoir about a woman who decides to proceed with a high risk pregnancy. I think you'll like it.

Robin said...

Amen and amen.

But try to make THOSE people understand it.....

Deb Shucka said...

Your teaching heart and your mothering heart show us love in its purest form. Thank you.

Michelle O'Neil said...


Wanda said...

I, too, am pro-choice and I am so glad I have never had to make the choice. I don't know what I would do--but I am so glad I have a choice.

Anonymous said...

I was browsing google images for hairstyles and your blog came up. Odd isnt it? Well anyway..I am the mother of a very ill special needs child, and I couldnt have said it better. Thank you

Amber said...

", and give us our humanity."---

Will do. ;)

It is good, loving advice.


Anonymous said...

All i can say is you touched me deeply and i do not know why i am sitting here crying.LOVE LOVE LOVE

Drama Mama said...

That's all I aim to do, is to give and take humanity.

Even my jeans deem me a citizen of said humanity

people don't know what to say

and sometimes they say stupid or thoughtless things

i'm seeing this repeat over and over in my life with my daughter

thank you for these words

pixiemama said...

Yes, yes, yes.
Simply human.
Truer words never spoken.

Kathryn said...

Thanks for this post - I can so relate to every bit of it.

She said...

I so appreciate and love your humanity!

kario said...

YEAH! What she said!