1 year ago at the Buddy Walk, the parking lot was the hardest. Sophie was 3 months old. Despite having her Ds diagnosis prenatally, we were still new to this world. I had left my career working with victims of domestic violence for many years to move to a new city in a new state, with no friends or family, to stay at home. The move was less than 2 weeks after her discharge from the NICU. Sophie was still recovering from her duodenal atresia surgery that she had on the day she was born. I know now that it took many, many months for her to truly recover and start to really live.
In the parking lot I shook and nearly got sick. Fear ruled the day. What will I see here? People with Down syndrome of all ages and abilities will be everywhere. Will Sophie look like her, talk like him, walk this way when she gets older? Most days you can go about the business of living and (sometimes) forget about Ds. Not here. Not at the Buddy Walk. I was afraid.
1 year later. In the parking lot was a different family from where we once were. In matching TEAM SOPHIE shirts, we headed to the event. Alexander led the cheer, "Teeeeam Sophie!" Over and over again. This was Mark's favorite part of the day. And though I still cried throughout the day, it was for very different reasons.
It was a wonderful event in special thanks to Cathy's crew who really amaze me (and many others from our local DSN). We got there just in time to see the end of the Illinette's performance and get a good spot to see Karen Gaffney speak. Karen is an incredible person. It's not just that she is an accomplished swimmer who happens to have Ds, or that she happens to be a gorgeous blond woman. She started The Karen Gaffney Foundation, a non profit organization that is dedicated to championing the journey to full inclusion in families, schools, communities and the workplace for people with Down syndrome or other developmental disabilities.
Karen is an inspiration when she speaks. Her speeches aren't all flowery and feel-good either. She has no qualms about challenging her audience. At her reception the night before, she spoke of her desire to get rid of all of the old and inaccurate information that unfortunately still exists about Ds. She spoke of challenging doctors and anyone who put limits on her or anyone who has Ds and instead say "Yes we can."
October is my favorite month. It means Autumn is here. The leaves change, there are football games and a crispness to the air. Halloween is celebrated all month at my house. Mostly it reminds me of the start of the school year. Karen thanked everyone who came to walk that day. She thanked them for being a buddy. Then she challenged us. (paraphrased) It's not enough to be a friend for one gorgeous day in October. Just like you, we want the same things. We want to be included. We want friends, everyday. We are more alike than different, she said. Our eyes or the shapes of our bodies may be different, we may walk differently or talk differently, but it is who we are on the inside that matters.
She spoke of her experiences in school. Sitting down at a table in the cafeteria only to have the other kids get up and move. Longing for a smile when she looked up but seeing the other person look away instead. She said that it takes courage to reach out and befriend a person with Ds or another disability. She asked us to not give up if we reach out and don't get through the first or second time. The person may be so surprised that they might not know how to reach back, but keep trying.
School. Friends. Fall. Acceptance. I cannot know what school will be like for Sophie, but I do know my daughter. I know she draws people to her with her personality. And I hope. Hope ruled the day this year.
And to Liz, Austin, Emma, Grandma Mary and our new buddy Aida (a beautiful 17 year old young woman who is friends with and a neighbor to my sister, who fell in love with Sophie through Liz and this blog - who ASKED to come and walk with us this weekend and again in Waterloo, IA next weekend) I THANK YOU!
1 last thing, a glint of white is beginning to poke through on the upper right of Soph's gums this morning. 15 months with no teeth and now we are getting 2!
Enjoy your day and the montage.