I spent this morning talking to a mama on the phone. Twenty-nine years ahead of us on this journey, her voice oozes with the same love I feel for my own kids except there's more--years of stories, struggles, victories, experience. You can hear it behind her words, you can feel it in her voice. Her thirty-two-year-old son shares Nella's extra chromosome, and after speaking briefly with him last week during a radio interview, I can't wait to meet him and his mama soon. We look ahead on this journey, following the path paved by many before us, and we learn from other mamas who fought hard and loved much.
"What can't Nella do?" my friend asked me the other day. "I mean, seriously, what are the known things she'll have to face?"
I thought for a moment and rattled off what I know--cognitive issues, muscle tone stuff, increased likelihoods for a number of medical complications. Together, those things spell out that things will be harder for Nella. Harder to learn, harder to prove what she knows, harder to gain acceptance, harder to get a job, harder to make friends, harder to claim the rights we all enjoy and take for granted.
That sucks. And when you love someone so much--so, so, so, so, much--and you stare at her little three-year-old self all smiling at you and completely naïve about her future and how hard it might be--sometimes you feel like you're going to vomit.
But there's Fight or Flight. And I can fight like Mohammad Ali.
Sometimes when I'm running and I feel like I want to stop; sometimes when I'm cleaning and I'm too tired to finish; sometimes when I'm working and I need a break; I think about Nella and how much harder she'll have to work and all the extra obstacles she'll face in life. When I think about that? I can't stop. Sometimes I even play silly games in my head, ridiculously pushing myself as if in doing so, I'm taking some of the burden off my child.
I wish it was that easy. What I can do is believe in her. Love her. Read to her. Celebrate her. Teach her.
"I am conscious of a soul-sense that lifts me above the narrow, cramping circumstances of my life. My physical limitations are forgotten- my world lies upward, the length and the breadth and the sweep of the heavens are mine!” ~Helen Keller
So that we do. And we will continue to learn as we support each of our children, creating as best as we can an environment that both challenges and celebrates them.
I received an e-mail a few weeks ago sharing a speech that will be delivered to a graduating high school class this year. Carrie, who graduated from the school in 1997, also has Down syndrome.
I'm thrilled she's letting me share her speech with you today. She's worked very hard, and I'm so inspired by her determination. No matter what our circumstances may be with Nella (and Austyn and Brandyn and Lainey and Dash!), stories like Carrie's provide hope and promise.
As a graduate of the class of 1997 I am very honored to speak to you today! It took most of you who are graduating today twelve or thirteen years to complete your education. My education began in 1976 when I was six weeks old and enrolled in an Early Intervention Program and continued until I graduated twenty-one years later with an I.E.P. diploma.
As we continue on this journey, preparing for school and new social situations in a few years, introducing letters and words, investigating new learning strategies for Nella and constantly stretching, shifting, and challenging our perspectives, we hang on to those powerful words of Helen Keller: "...my world lies upward, the length and the breadth and the sweep of the heavens are mine."
Thank you so much, Carrie, for sharing your story with us.