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

Time and Acceptance

There are moments that serve as pivotal hash marks in the timeline of your life, that mark transitions between who you were and who you are after. For us, May 9th 2013 is a date we remember. It was the day after I turned 29. We sat in a dark room lit by the glow of an ultrasound screen. I was 20 weeks pregnant and our first ultrasound revealed a “thick nuchal fold” or skin on the back of our baby’s neck. Our hearts hung on every click of the keys entering nonsensical codes that would culminate in this hash mark moment: “There is a 50% chance your son has Down Syndrome.” I felt like I had been punched in the stomach. Time stopped. Everything was happening outside of me and I was not part of it. Adrenaline was rushing to protect me from the information and while I was fleeing, John was fighting. Continue reading

Pass the maple syrup.

If you’ve arrived here thinking this is John’s Guy Fieri-esque food blog, I am sorry to disappoint. Although it was an “epic snack-down” that inspired the name.

Last August, John and I took a trip out to California. A friend was getting married and we decided to make a vacation of it. Outside of a couple sparse weekend trips to drive-able places, we hadn’t been on a real 7-day vacation in 5 years, so we were pretty excited. To save on airfare, we decided to fly out of Nashville, but before heading to the airport, we decided to stop off at John’s favorite Nashville breakfast spot: the Pancake Pantry. Continue reading