THE SHAPE OF NORMAL is the tentative title of my book, which will debut in the fall of 2023 (Vine Leaves Press). My story opens on the day my husband, Chip, and I make the difficult decision to move our twenty-eight-year-old daughter, Jessica, into a group home. No longer the primary caregiver for her, I wrestled through tangled emotions I had silently struggled with for years. I recall the tidal wave of anger and grief, shame, and denial with unflinching honesty, which I felt when I first received Jessica’s diagnosis.
Jessica, my grown-up child, has graduated from Sesame Street to YouTube. She collects teen magazines, plays her music at ear-splitting volumes, and sings the lyrics to all the top-ten songs. I have struggled with unresolved feelings, my ableism, and fear of how the world perceives Jessica. But the beauty of acceptance is that it happens both slowly and then all at once. Denial crumbled away bit by bit with each passing year until I found I was embracing reality as the messy and imperfect story it is. I had spent too long grieving the loss of the storybook future when there was so much to value about the family and daughters I have.
I think of my circle of friends with children with disabilities as a community of outliers. Together, we face a world that doesn’t always view different as equal.
In many ways, Jessica is my hero, the catalyst who inspired me to write THE SHAPE OF NORMAL. There is a multitude of challenges to raise a girl with cognitive disabilities. My story offers invaluable lessons in how this mother overcame adversity and learned the lesson of acceptance and unconditional love. My daughter was never broken.
And I was never on a hero’s journey to save her.
I was the one who needed saving.5