When I agreed to stand in front of the room crowded with volunteers and talk about my life, I thought I would be doing something good. Advocating, giving back, talking about how amazing my daughter is. I didn’t anticipate the voice on the phone, two days before the event, asking me to “talk about what people don’t see, the hard stuff, the ugly stuff”.
I began, reading my words from a piece of paper, an excerpt from an essay I had written; Splashing In The Rain.
I started with this:
“The other day I found myself within earshot of a mom with a young child. They were near a field of grass, when the child took off running. The mom tagged behind on the sidewalk, along the field, and after a moment began yelling to her child.” Stop running. STOP. RUNNING! She called out, again and again.
And then, I wanted to yell too.
To this mom, I wanted to yell, “LET. HIM. RUN.”
“Let him run for my little girl, who never has.
Let him run, and smile and run faster and then fall and roll in the soft green mounds, until he is covered with grass and sweat and laughter.
Because there are little girls like mine, who will never run, who never know what that moment feels like.”
Originally, I imagined myself standing in front of the room, speaking as I have before, sharing my story with the same optimism in which I greet each day, write essays, and meet every new challenge—with a positive perspective that has been hard won.
Won by fighting and finding a diagnosis for my daughter, by the lessons learned, to slow down and celebrate the simple things. It’s been won by the way being a mother made me a better, kinder person. I never thought about how easy it is, sharing a positive perspective.
Won by sharing what other people don’t see, the ugly stuff. Why? I wondered.
“I don’t want to use my wheelchair, mommy. I want to walk,” my daughter tells me. The ugly
“Why do people stare at me?” she asks. The ugly stuff.
“Zoe is going to learn to walk one day mom, right?” said her sister. The ugly stuff.
The stuff that keeps me up at night, hurts my heart, and makes me cry at school plays and field days.
“I am scared, mommy. I have never been sick like this before” my now teenage daughter, tells me. The ugly stuff.
“I don’t want to think about the future when I’m not here,” my husband says. The ugly stuff.
I stood, straight and tall to my 6-foot height. For once I didn’t think about what led me to start writing my stories 10 years ago. I didn’t think about encouraging or inspiring other moms of special needs kids. I didn’t think about advocating or educating. I just started by sharing the ugly stuff, with my feet shifting from side to side as I began. It was an essay shared widely, appreciated for its positive perspective and inspiring ending.
I started by reading the most painful part. The ugly stuff.
Somewhere in the middle, my voice started to shake.
I was that new mom again, desperate to help my sick baby. I was that mom, who had held my child down for labs and procedures, knowing she would have some comfort if it was the familiar force of my body pinning her down, my soft voice singing a lullaby into her ear. To eventually come home from the hospital and finally alone, empty my body of grief, sobbing into the hot, running water of my shower.
I stood up and for the first time, started by telling my own, unedited story.
I shared the ugly.
When I stopped speaking, I had to wipe away my own tears. I was not the only one crying as I looked around the room, feeling the waves of kindness and compassion wash over me.
The ugly I began with had been transformed into a beautiful sense of understanding.