When my son Calvin was three he started attending a preschool thirty miles away called Morrison Developmental center, which used to be called the Cerebral Palsy Center.

Three days a week a van came to fetch Calvin, along with me or his nurse, to shuttle him to the center where boys and girls, both typical and disabled, schooled together. On most days, when we rolled open the door of the coach, we were greeted by a pretty little girl, Calvin’s same age, sporting a huge smile, strapped into her car seat, her head tilted back and to the side. At seeing us she became very happy and animated, her limbs making the unmistakable spasms indicative of cerebral palsy (CP), not unlike Calvin. She loved to stick her tongue out at me and so I’d stick my tongue out at her and we’d both smile fondly.

“Hiiiii, Ruthie!” I’d say, and I’d ask her if she was happy to be going to school, at which point she’d excite again, perhaps simply because I was engaging with her. Ruthie’s smile brightened any room, and it was as much in her eyes as in her precious grin. Her skin was smooth and ebony, and her almond eyes shined beneath a beautifully rounded forehead, her black hair pulled back tightly into one or two puffs.

I remember once sweet Ruthie crying the whole way down to school. It killed me—no way of knowing what was wrong or how to fix it for her. Like Calvin, Ruthie couldn’t speak, though it seemed clear that she understood body language. Ruthie was also deaf. But at the age of four, when she got cochlear implants so that she could hear, she started to learn her letters and to read and write.

Ruthie’s parents, who have four young children of their own, adopted her from an orphanage in Uganda when she was two years old. She became an integral part of the family, deeply loved by her parents, three brothers and a sister.

Last week Ruthie stayed home from school with a cold and a mild fever. On Sunday Ruthie didn’t wake up. The emergency room doctor said to her parents, “sometimes, with CP these things just happen.” I’ve wondered if she suffocated. I’ve wondered if her fever spiked and triggered a febrile seizure that stopped only when her heart did.

Though deeply saddened by Ruthie’s sudden death, I find my thoughts of her drifting off to fears for my own child. I wonder if Calvin will meet the same demise because of a simple cold or perhaps pneumonia. I worry, particularly in the winter months, that he’ll get the flu, spike a fever and have a bad seizure that won’t stop. Sometimes I think the worst, but then I remember I must live in the present and I must love Calvin like there is no tomorrow, as I am sure Ruthie's family did too.


1 comment:

  1. I am crying .... such a beautiful girl! That smile, those eyes. My heart is aching for her family. (((hugs))) Like you said, this is the stuff our nightmares are made of. :(