March 21, 2014

3:21 2014

A few weeks ago, I went in on a Thursday night for a meeting at the swim school. Our owner had hired a speaker from Australia to come in and do a couple of session with our group and with our leadership team. He had experienced a session with this man during a large swim conference and had been so impressed, he wanted us all to have that same experience. So, we shut the school down for a night and we all gathered around for his presentation.

The first night's session was more generalized information since it was the whole company in attendance, from high school students to the senior managers. I was only able to come to the second half of that meeting, but I could tell the moment I hit the door, that he was doing a good job and had their full attention. And he was very good. He was funny, and energetic, and he hammered a few catch phrases into our lexicon. He exposed some cracks in our happy little family, but he also gave us some tools to work on those flaws. Mostly, it was what you'd expect from these types of things: it made you think about your job and your work environment from an outsider's perspective and see how "the way we do things" isn't necessarily the best.

As he was winding up his presentation, I was happy with the night. I thought it had been worth the hour long commute I'd made in the rain to get there and worth leaving my family to fend for themselves for the night. He was talking about the "Facts of Life" and how if we can just accept these "facts" (i.e. traffic will always be bad at rush hour, your kid is always going to spill the juice, your coworker is always going to be late, etc.) and not spend the time dwelling on our anger, we can be more productive with our thought patterns.

It wasn't until he started to talk about how sometimes we have to adjust what we consider the facts of our lives that I had any inkling that this was going to hit closer to home than I had expected. He started talking about the birth of his daughter, 17 years ago, and how their "facts" had changed in an instant. He talked about how a doctor had rushed into their hospital room and had three "facts" that would forever change their lives.

And I knew.

My eyes started to water, my throat got tight, and in my head, I was lying in that hospital bed with my own shaky doctor delivering me the new facts of my life.

He flashed a picture of his daughter in the NICU on the screen, and that was it. I was sitting there, surrounded by 30 people who knew me to varying degrees, trying my hardest to not break down into sobs. I could feel the weighted stares of coworkers who knew me best, I could feel the sympathy and concern pouring off them. But all I could see was that sweet little face on the screen. I knew that face. That face had Down syndrome. She looked just like my sweet Sam did.

He went on to tell about how amazing his daughter is and all she's accomplished in the last 17 years, while I struggled for control. Looking back, if he had started his story anywhere else than in that hospital room, I would have been fine. Show me pictures of teenagers at Special Olympics or gap toothed kids running on a playground and tell me they have Down syndrome, and I'm all smiles. Start with flashbacks to the hardest moment of my life, and apparently, I'm a weepy mess.

At the end of the night, I wanted to apologize for my tears in the middle of his presentation, so I waited around to say goodnight. I pulled up a picture of Sam on my phone and just held it out as my only explanation:

Here's my boy. My own deliverer of new facts. My entrance fee to this club we are both part of.

Today is World Down Syndrome Day. We started celebrating this during Sam's first year, and people around the world have been celebrating it for the past 9 years. Luke's preschool invited us back again this year, and we sat in the gym, surrounded by kids wearing yellow and blue and talked about Down syndrome. We talked about how there are things that are hard for all of us: tying your shoes, riding a bike without training wheels, learning to sit still; but if we practice hard enough and long enough, we can learn how to do it. Sam has to work that hard on things like walking and talking, but just like them, if he works hard enough and long enough, he'll be able to do it too.

This is my favorite day of all the new things we were given with this diagnosis because like I said last year: "We aren't asking for money. We aren't asking you to walk or run or climb a mountain. We aren't asking you to sign a petition or to call your congressional representative. While those things are helpful in the bigger battle we face in making sure our children and members of the DS community are taken care of and given a voice, that's not what today is about."

World Down Syndrome Day is a day set aside to help us open our eyes a little bit more to the people around us who may be working harder because genetic defects exist. It's a chance for us to show support for those families and people who are affected by this diagnosis and to resolve to learn more so that we can do a better job making space for people with Down syndrome in our world.

This year, for me, it's about sharing a hug with a virtual stranger from the other side of the world because despite all the things that make us different, we are both parents of one of these incredibly joyful, difficult, amazing, life-altering children, and that gives us an entire world in common.

For more resources about Down Syndrome, check out the National Down Syndrome Society.
There have been some excellent videos made recently about Down syndrome. Check out these favorites of mine:
#DearNewMom: https://www.youtube.com/watch?v=Ju-q4OnBtNU
Just Like You: https://www.youtube.com/watch?v=5M--xOyGUX4
The 1000 Miles of Luca: http://vimeo.com/84061549
And this new movie, which I haven't watched yet, but I can't wait to carve out the time for:
Friends of Mine: http://www.frindsofminefilm.com/

1 comment:

  1. Thank you, Tori. You and your family are a blessing.

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