The Business of Awareness

Owen had the best view at the 2014 Steps to Independence Walk.

Owen had the best view at the 2014 Steps to Independence Walk.

We kicked off the month of October celebrating with our local DS community at the Steps to Independence Walk benefitting Down Syndrome of Louisville. We raised over $2,000 this year, and on the 4th, family and friends gathered on the waterfront to participate in our very first walk! To those that contributed and participated, a big huge thank you! It was a beautiful day and a great way to kick off October which is Down Syndrome Awareness Month in the US.

It has been a crazy month for us as a family and I haven’t been as ambitious as some bloggers taking on the 31 for 21 challenge or 31 posts for DS Awareness in the month of October, but I have managed to read quite a few of them. As I have been reading my wheels have been spinning about this business of awareness.

What do we mean when we say we want to raise awareness? Because people are aware of Down syndrome. This isn’t a new thing. Down syndrome was identified in 1866 by John Langdon Down, but there are visual representations dating back to the 16th century that depict individuals with DS. Usually awareness campaigns are reserved for relatively unknown or increasing prevalent conditions. 1 in 700 births is a baby with DS. It’s been around for quite some time and hasn’t really fluctuated in incidence. Most people have known, met, or at least seen someone with DS. I’d be hard pressed to find someone who hasn’t heard of it. Continue reading

Join Team Owen!

If there were an award for “Best Place to Live If You Have a Child with Down Syndrome” I have to think Louisville, Kentucky would be in the running. I am proud to live in a community where there is a partnership between our local Down syndrome organization and the medical community. I am proud to live in the second state in the U.S. to pass a Down Syndrome Pro-Information Law. I am thankful that when we bought our house seven years ago, we happened to pick a home that is two and a half miles from the Down Syndrome of Louisville Lifelong Learning Center. And I am glad that they were our first call after we received Owen’s diagnosis. Continue reading

On Suffering and Down Syndrome

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The face of suffering.

I received the comment below on my last post concerning Richard Dawkins’ recent twitter comments:

“One comment that Richard Dawkins made was cherry picked and is now being used to demonize one of the greatest minds of our time. I may not always agree with Dawkins, but before you go off on him for not being more accepting perhaps you should make sure you read the entire conversation.

I have made a conscious decision to not have children as I do not want my mental illness (bipolar II) passed along. You ask “Who are we to decide which lives are precious?” I ask “Who are we to impose a debilitating condition on a life form?” I’ve had days where getting out of bed is a superhuman feat. I’ve been on the psychological/pharmaceutical merry-go-round for 30+ years, and there is nothing beautiful about it.” Continue reading

“Abort it and try again”

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“Abort it and try again.”

Was this nasty comment made by a faceless internet troll? No. Immature teenage kid? No. This twitter gem comes from Oxford scholar Richard Dawkins in response to a woman pondering today whether or not she would continue a pregnancy if she learned the fetus had Down syndrome.

When I logged in to twitter to see how this great mind had responded to the ensuing backlash, I was hoping to see a well thought out, albeit misguided rebuttal. I was surprised to find this:

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This is supposed to be one of the most intelligent voices of our time, and a champion for critical thinking and evidence-based logic. His defense is “everybody does it.” Continue reading

One Year Later (Part 2)

This is the second post in a 2-part series reflecting one year after we found out our son would have Down syndrome. You can find Part 1 here. Following our diagnosis, we had limitless support from our family, friends, doctors, and our local DS organization. But we still didn’t have our baby in our arms yet. There was so much we didn’t know about him and all we had were statistics and other people’s stories to try to piece together an image of what our lives would look like. Stats and probabilities weren’t really doing a great job painting a picture of the future. Here are some of the things our doctor wasn’t able to tell us about our son that day. Continue reading

One Year Later (Part 1)

20 weeks pregnant

20 weeks pregnant with Owen

 

One year ago today we got the call. The one that changed our lives. Actually we got the call the night before. On May 9th, the day that we were told that there was a 50% chance that our baby had Down syndrome, I had blood drawn for a MaterniT21 test. On May 16th, 2013, we received those results. Continue reading

Limitations and Obstacles

john and owen

 

“I’m just not that kind of person.”

“That’s just not how I’m built.”

“That’s one thing I know I could never do.”

You’ve probably said something like one of the above phrases before, most people do. For me phrases like that are a pet peeve. I can’t stand when someone tries to get out of trying behind an excuse of specialization. It implies that someone can’t do something because they are in fact, awesome, but simply not awesome at this particular thing. But oh, if you could only see them doing one of those other nebulous things at which they excel… just not this. Continue reading

Super Heroes and Silly Daddies

The following is a poem I wrote about my son, Owen, who has Down Syndrome, before he was here. When I wrote it I was scared and nervous, and as I mentioned, getting ahead of myself.

June 29, St. Louis Coffee Shop.

“How can I love you if I don’t know you?  Continue reading

Dear Future World | World Down Syndrome Day

The day that I found out Owen would probably have Down syndrome was a somber one. I was sad, scared and angry. I remember thinking that the song “Paint It Black” really spoke to me. Our house felt like a funeral. Fast forward to today and there is a much different tone. It is World Down Syndrome Day. The sun is shining, my baby is smiling and I am celebrating the fact that he has an extra chromosome. The mood among those in the Down syndrome community is celebratory. Everyone is excitedly sharing their “Day in the Life Stories” to show the world that our kids lead pretty normal lives. I am excited to see people on facebook sporting blue and yellow or colorful socks to celebrate today. I am excited to see people participating who aren’t directly connected to someone with Down syndrome. It’s a good day. Continue reading

Spread the Word

As the mother of a child with Down syndrome casual conversation has become a minefield of R-bombs. Suddenly you are going along, having a nice conversation with someone. Someone who knows you, maybe a friend. Maybe someone who knows your son has Down syndrome. And then out of nowhere… “that’s retarded.” And it hits like a punch to the gut. A flood of emotions follows. How could they say that? Surely they don’t know what they just said. They must not because they just kept going on with their point like it was nothing. They just weren’t thinking. They’ve met Owen. They love him. Do I say something? I don’t want to make them feel bad. But I can’t just let that slide. I have to stand up for my son. Why did they have to use that word? They just weren’t thinking… Continue reading