Tuesday, March 15, 2011

The Hurt

Eight months ago I had the perfect life.

Eight months ago I clutched my stomach and relished the pain that meant that I would soon hold my newest boy in my arms.

Eight months ago Austin was born with an extra chromosome and the pain that I had felt from his birth was nothing compared to the pain in my heart. I cried for my lost grandchildren, and for the boy who I thought wouldn't look like me, I cried for everything I thought I'd lost.

This place is an honest place.

I cried for me.

And then I stopped crying and started learning, and since those first few days my fears have been proven false, and my tears were spent.

And then I saw a video . A recent social experiment filmed for a major network, titled "What Would You Do?" In this episode a young actor with Down Syndrome posing as a grocery bagger is berated by several types of people to see how the public responds.

At first I watched with a smile on my face. This young man could very well be my Austin twenty years from now. I just wanted to reach through my screen, push back his stray lock of hair, and tell him how great he was. But then the "experiment" started, and when the fake insults came I thought I was prepared.

"Oh my God could you go any slower?"

"Ugh, I had to pick the retard line"

"Can you believe they hire these people?"

It when on and on and on. And every word was an arrow through my heart. And I cried.

This is an honest place.

I cried for him.

I went sobbing to bed, and as my husband rocked me back and forth I said. "It's so pointless. No matter how good he his, no matter how hard he tries, it just doesn't matter, because it won't matter to them."

I lost my hope that night. I watched Austin sleep and the despair that I felt in those first few days started to creep back. I was shaken to my very core, because no matter how far advocacy has come it's not far enough. Yes these people were actors, but this is our reality. Yes people stood up against those hurtful words, but those words are still used so often. And I can't protect my baby.

Sometimes this mountain that we're climbing seems so high. I know we will get there. I know that my hope will come back, because I believe in Austin, and I believe in humanity, and I will raise him to know, as one women on the video so eloquently put it, that "people with the biggest disabilities are most often the ones you can't see."


  1. Watching that video brought tears to my eyes too. It absolutely breaks my heart that there are people like that. You are a strong, brave mama and you will raise your baby boy to be the same! Thank you for sharing!

  2. Julia as a mom of a daugter with special needs this video moved me in many directions as well. I was mad and sad that my child will face a sometimes cruel world and I was encouraged that people were willing to stand up to this abuse.

    It has been the oddest gift to be the mother of a child with visable differnces. Yes there are insenstive and just plain jerks out in the world, but there is also great kindness. I have had people stare at us, and have at times comfronted it. But the majority of people have been amazing to me and Lizzy.

    Austin is just a baby, he has just begun to show you how strong and wonderful he is. Also, your other children will develop a kindness and spirt that they may not have if they did not have the gift of their brother. Yes, it can be painful, but I have also witnessed strength and kindness that I did not know existed. Both in myself, my children and the outside world. I love your blog! You write so beautifully and express yourself so elougently. Thank you for sharing your journey!

  3. Thanks so much for your words blogging friends!!I've really struggled this past few weeks, but I'm glad I came back and wrote about it. Your words mean so much<3

  4. Julia, I'm so glad you wrote about the hurt. I cried for you and for Austin, and for myself, because he a a part of me too. However, we know in our hearts that he is and will continue to be a joyful, happy person who is greatly loved! Nana

  5. I too get really down when I think about the future and how my Calvin will be perceived by some others. I am going to work hard to step back and let him work his magic.

  6. I hope you have a church family like my daughter has found that has embraced her special daughter and shown her kindness and care - has included her - even other children helping her walk up and to stand and sing with the choir (music is her favorite thing) ... being given a tiny solo: so much love. She experiences nothing but "normal" when she walks through those doors and I bless every member of that congregation for being God's hands toward her.

  7. I've only ever seen the a few funny looks in my Uncle (who has Down's) direction. Everyone who knows him LOVES him! And, because of the magical way that he sees the world, he loves everyone.

    Sure, he experiences frustration due to language difficulties - he is 50 and didn't have the educational/speech-language-therapy opportunities that younger people with Down's have - and his best friend is imaginary - SO CUTE! - but he lives in his rose-coloured version of our world. Those of us who get to peek in there from time to time are privileged. The haters miss out!

  8. Oh Julia. I cried those same tears of heartbreak when I saw that episode. I wanted to spend the whole next week just holding my baby girl and telling her that it would be ok and the world can be a cruel place. (Of course, she was barely able to do much more than eat and sleep still, so she had no idea what was going on with me, other than the fact she was getting some darned good cuddling!)

    I hope as our kids grow, we can start to change some of the ugliness in the world. I know, realistically, there will always be some out there. But how can anyone look at Austin, look at Kaetlyn, and not see pure joy?

    Thank you so much for posting this. Your honesty speaks for all of us!

  9. Oh, this touched my heart so much. You are an astounding mama!