There she was, my little girl, standing in the front row, wearing a dress from my childhood and her patent leather pink party shoes, singing every word of the kindergarten concert. Wait–I should say–belting out every word of the kindergarten concert, performing every motion, playing her sticks in time with the music, and standing still (mostly) between the songs. There she was, my little girl. My little girl with Down syndrome.
I suspect that every parent feels a surge of pride and joy and gratitude in watching their child love life. But I wonder whether that pride and joy and gratitude is amplified, if it swells the heart just a little further, when that child has a disability. All I know is that my heart was about to burst on Friday when I sat with William in my lap watching Penny and her peers serenade us all.
We moved on to the party in her classroom. Each student had prepared a paper of “My Favorite Things” to read aloud to the parents and grandparents and siblings assembled. Some kids mumbled. Others spoke up. Some spoke in sentences. Others needed prompting. It came to Penny, and she stood up as tall as her little frame would allow. Her voice was clear and strong as she read, “My favorite subject is reading. My favorite school lunch is yogurt. The best thing that happened to me in school this year was reading a book. My favorite place in school is library. This year, I learned a lot about reading.” She turned over her laminated paper to show us her drawing, and she narrated: “This is me. Reading.”
I look back to my first post about kindergarten and through the year as she began to make friends and now, as she reads books all by herself and is teaching William to spell and as her friends yell out to me, “Mrs. Becker, when can I have a playdate with Penny?”–and I hardly know how to contain my gratitude.She struggles. There are still days when she comes home with “lots of x’s,” which usually involves a report that she has stepped on a friend’s hand or poked someone with a pencil or picked her nose and stuck it on someone’s arm or, in the most humorous of said reports, mooned her classmates. The school system struggles to accommodate her needs. Outside the school walls, people use language and make assumptions that sting. But at the end of the day, my daughter has been included and accepted for who she is. She has grown in immeasurable ways because she has been loved and been able to love in return.
In A Good and Perfect Gift, I recorded a journal entry from December of 2006, when Penny was almost one year old:
I am filled with contradictory emotions: “The hopes and fears of all the years are met in thee tonight.” Struck by how much hope I have for Penny–that she will live a full life with friends and laughter and arguments with her siblings and an ability to give back to her community and a knowledge of God’s love. Hope that she will go to public school and that her heart will heal and that she will speak clearly and read and write and walk and run and dance. Hope that she will sing and play music and ride horses. Hope that she will be received by many for who she is, valued by many, loved. Hope that she will surpass expectations–physical, mental, social, emotional. So much hope.
It almost feels funny to quote the rest of that journal entry, as every statement of hope I recorded six years ago has indeed come to pass. She argues with William every day. She makes me laugh every day. The thing she said she wanted to learn more about next year–music. So much hope. But back then, when I couldn’t have known, I also wrote:
And with that hope comes intense fear that little of it will come to pass, that she will suffer, be mocked, that her little body will betray her. Fear that she won’t succeed, or that she won’t have friends, or that we won’t be able to give her what she needs. Fear that Down syndrome is what I thought it was a year ago. Fear that our culture is right, that she is undesirable, that an extra chromosome is a mistake. I don’t want to hope, sometimes, because I don’t want the fear that accompanies the hope.
There’s still fear as I look ahead and we move to a new school. But it is easier than ever to hope.