Holy cow, if blogs could gather dust, this one would need an industrial strength vacuum to clean it. It's been a while. We've been chugging along with school and work. Both boys have adjusted to this school year beautifully.
Today, I took a sick day to stay home with Bryce, who is recovering from a stomach bug. It gave me the opportunity to finish the book I was reading. It is called An Uncomplicated Life: A Father's Memoir of His Exceptional Daughter. It was written by Paul Daugherty, a sports writer, about life with his daughter Jillian. Jillian is a funny, charismatic, thoughtful, determined young woman who happens to have Down syndrome. My husband bought it before a recent trip, and of course I hijacked it as soon as he got home. Reading is my crack.
Reading books about people with Down syndrome is always an emotional roller coaster for me. I laugh, I remember, I cry, I worry, I relate. I feel guilt for not doing enough. I question myself. I have been realizing more and more lately that we need to start doing something about Bryce's future. Our first year with Bryce was adjusting to the idea, falling in love with him, and shock. The last two years have been a lot of worrying, knowing that we should be doing something, and wondering what that something is--and where the money to do it will come from. So far, it's been about enjoying his smile and hugs....cheering him on, watching his love affair with his big brother. But he's not going to be a cute little boy forever. The hard stuff is coming. And we're not prepared.
I'm really good at worrying. What I'm not good at is action. Those who know me well may be shocked by this, but I'm actually a very shy, self-conscious person. Making friends is really hard for me. Making phone calls requires an internal pep talk. There have been many times lately that I wish we were part of this big Down syndrome network I hear so much about. I follow Ds groups on Facebook. We've been to Gigi's Playhouse a few times. I've looked up our local group's meeting schedule several times. I know the network is out there....but I've been hesitant to jump in. Part of it is denial (still), part of it is avoidance, but the biggest part is that self-conscious, shy, introverted girl I have inside. Joining is just plain hard for me.
That is why I'm thankful people like Paul Daugherty are willing to share their story. I can learn from him, because he's been through it. His formerly adorable little 3 year old is now a grown, married woman who graduated high school and experienced college. He and his wife have been in our shoes and I can learn from them. I envy their attitude and their work ethic. From the moment their daughter was born, their motto for her was "Expect, Don't Accept". I do expect great things for Bryce. I expect him to live on his own one day. I expect him to make friendships, find hobbies he loves, and fall in love. Paul Daugherty and his wife have shown me what it takes to make sure that happens. Expect, don't accept.
The thing I loved most about this book, though, was the author's ability to put into words what I have always tried to express. I post videos, pictures, and anecdotes of Bryce online, DESPERATE for people to see his joy, his "magic". Everyone thinks he's adorable, but DO YOU GET IT??? You can't possibly get it unless you know him like we do. But I'm desperate for you to understand. He isn't a typical boy. He's pure, unadulterated joy. It's nearly impossible to have a bad day when Bryce is part of it. And 90% of people who find out they are expecting a baby with Ds abort. I just don't get it. They don't get it. Most of the doctors don't get it.
In An Uncomplicated Life, one of the last chapters is titled "Number 47". In that chapter, Mr. Daugherty talks about that 47th chromosome that makes our kids so unique. For some reason, our Bryce was given 47 chromosomes instead of the usual 46. What exactly does the 21st chromosome do, and why does having an extra one lead to the shared characteristics of people with Down syndrome? I don't know. But I completely agree with Paul Daugherty when he calls that 47th chromosome "a storage tank for all her good stuff". He says, "Number 47 contains a lot of what makes us good. It has to. Somewhere in that bonus wiring is a connection to compassion and kindness--a plan for how to be better."
One of our nurses in the Level II nursery wasn't sure that people with Ds aren't just more evolved than the rest of us. She talked about how we don't have a right to take their lives or underestimate them....maybe they are better than the rest of us. They have more genetic material than we do, after all, not less. The more I get to know Bryce, the more inclined I am to believe her. Jillian Daugherty, and Bryce, and the thousands of other people living with Ds know something we don't. Don't worry so much. See and assume the best in people. Love and be loved. Live for today. Do everything with joy and gusto. Life doesn't have to be so complicated.