remembering mary

by Elizabeth de Barros

If she were still alive, these Orwellian days would be no match for my grandmother. She could defy an entire institution with a single phrase. The day she gave birth to a baby girl with Down syndrome, she did.

In 1949, that baby girl — my paternal aunt — came into the world bearing red hair, two club feet and Down syndrome. In those days, the term “Mongoloid” was synonymous with Down. My grandmother found the label offensive, as was the doctor’s monstrous advice to institutionalize her after they discovered she happened to have an extra chromosome.

To that suggestion, my grandmother tightened her lip. “Over my dead body,” is all she said.

Diamond clarity, like brutality, is read in many ways.

“Mary,” 1959

Mary may have been “different,” but her ability to bring delight to any situation is what truly set her apart. She shocked a line of somber relatives when she uttered, “Pop’s pale,” after viewing the casket where her father lay. Just about tore the place up. Timing was on her side.

Mary Ann was her given name, but she answered equally to Mary, Mag, Maggie, and Aunt Mary. She preferred none — she knew who she was. My earliest memory was her world of work, which consisted of daily repetitive writing, filling countless spiral notebooks with letters and numbers written in magic marker of every color imaginable. She had a penchant for collecting pens, pencils, and markers of every size and color. She used all of them.

She also amassed what seemed like every vinyl record 45 that had ever been cut. Had oodles of them. Neatly stacked, the black towers leaned like Pisa — protecting and tending to her private collection when she wasn’t climbing up the steps of the bus that took her to daytime workshop.

Another side to Mary was how she kept things hopping.  At any given moment she could be heard singing very loudly and off-key to Bobby Darin’s Mack the Knife or one of David Cassidy’s hits. Other times, she shut everyone and everything out, absorbed in rooting for the home team, tracking innings and keeping score while guzzling Coke from a 10 ounce green glass bottle. Mary was ever resourceful, deliberate, and genuine.

Brilliant.

Admittedly, at about six or seven, I was secretly afraid of Mary. Not only was she 14 years my senior, she was thrice my size and only all too eager to take on my two older brothers in wrestling — at the same time. They loved the challenge. I distracted myself by playing with her Etch-A-Sketch and searching for a marker that still had ink.

A few years later, I discovered teen idol Bobby Sherman by reading her pile of Tiger Beat magazines.  Mary was alright. I realized this about the same time I began noticing my grandmother’s doting ways, and how she laughed at all Mary’s jokes. I was vaguely aware of the strain she carried from her daughter’s numerous corrective surgeries and often serious health complications. As I got a little older, my grandmother ‘s fears about who would take care of her daughter after she was gone were well within earshot. Her questions somehow became a part of me, if only in a silent way.

Life has a way of answering. By the time I was 21, Mary had outlived her parents, and for a brief period her care fell to me. A short season, but long on providence. First on my list of things to do was to take her shopping for some new clothes. Next, we hit the movies. In 1983, four bucks got us in to see Star Wars: Episode VI: Return of the Jedi. To this day, I don’t know which was more exciting, soldiers on speeder bikes flying through the forest moon of Endor or her belly laugh reaction to Ewoks. Nothing was ever wasted on Mary. When time came to help wash her hair, those fragrant suds made for us extra-long white beards and a sense of connection. I learned a few things about my aunt that summer: how capable she was, the number of diabetic sores on her scalp, and what love looks like. She may have been twice my size, but everything else about her was like fine china, to be handled with care.

Over the ensuing 15 years, Mary went on to live with her eldest brother and sister-in-law, treated like a doll in a dollhouse. She had lost weight, her hair was curled, and carried herself like a lady. But when acute dementia set in, her overwhelming needs forced the decision to place her in an assisted-care facility. The beginning of the end, or so it seemed. She still managed to outlive every member of her immediate family, except for one brother whose honor it was to give her a proper burial in 2005. She was 56.

Sad ending, but not tragic. The institution didn’t suit her anyway — my grandmother’s worries were laid to rest.

To have known Mary was to never forget her. Her fluency in the language of love enabled her to teach it to everyone she met.

Down Syndrome

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