Darcie Whelan Kortan
My son James is 11 and has multiple disabilities—he is motor impaired (wears leg braces up to his knees), fine motor impaired (has trouble holding a pencil and can’t use a mouse), speech-impaired (if he phoned you now, you probably would only understand a few words), legally blind, and hearing impaired. Blessedly, his brain works fine.
These stories are easy, and they’re fun. Dancing, twirling—Spirit dusts every scene with unicorn sparkles, and Rowan listens with glossy eyes. Spirit makes sense to him because he loves magical thinking—loves the gleaming power of possibility. He still looks at the world with wonder. For him, if something is wrong, if he’s sad or angry or lonely, it seems perfectly reasonable that someone might throw a cupcake at him.
When I look back to when I first became a mother, I see myself enmeshed in a tangle of emotions. Wonder. Fear. A love so intense it left me feeling hollowed out and raw. In those first weeks and months—my baby’s fontanel still soft, his flailing limbs seemingly no more substantial than bird wings—I felt inadequate next to how much he needed me. Inept is always the word that comes to mind when I remember our earliest days together.
I just want this to be over. I want it to be six months from now. I want my son playing with stickers that weren’t just ripped off his chest, and I want his heart to be fine. I want him playing in the sun and stomping puddles in the rain.
This is where we are now—telling Rowan the stories that will help him make it to the other side of the hospital bed. These stories are not easy. This column, Heartsong, chronicles our journey. The title is the music of his story—the one we’ve told him a thousand different ways to explore a thousand different feelings and ideas. His story begins with that simple song, then launches into a world of childlike wonder, tempered by grief and buoyed by hope.
No one is guaranteed a second summer on this earth. I could try to bury this thought in the back of my mind, but I like to keep it right up front. The knowledge that time is limited has done much good for my writing.
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Retired ColumnsFrom "Life in the Sandwich" to "Special Needs Mama" to "Zen and the Art of Child Maintenance"—they're all here for you to explore.