Happy World Down Syndrome Day_ a tribute to eternal love

It was decades ago but I still remember snippets like it was yesterday. Sitting shotgun in Oma’s station wagon, my flute case on my lap, rain misting over the car as we barreled down the back streets. Into the waterfront community we went. We drove to where the gardens are shaped like animals and everyone’s lawn is immaculate and level. Beautiful flowers peek out of the rockery used to secure the hillside to each home.

We pull into the driveway and ascend the stairs to the front door. I look behind me at the Sound, the water glistening off in the distance, a dreary dark blue grey with just a pocket of sunshine hitting the waves and glistening back at me. Stepping inside I’m hit by the smell of them. Not in a bad way, but in the way that everyone’s home smells a little bit different. I gaze up at her cases of trophies and collectibles while Oma and her chit chat. We walk down the stairs past photos of her, of him, of their son.

I don’t remember if I was ever able to meet her son. She talked about him a lot and had photos everywhere and I always left feeling her love and grief. The love made sense to me. The grief, not so much to my small self. I could not put words to it, but I could feel it’s cloudy presence over her heart.

She would walk me to her music room, help me get set up, kindly ask about my day while Oma sat to the side, or upstairs some days.

© Yiannos1

Joy would teach me about music. She would teach me about playing the flute, about proper breathing, reading music.

© Argument

© Argument

What I didn’t realize until many years later that she was also teaching me the strength to love in the face of grief. She taught me how to have an open heart, a patient mind and how “disability” is a state of mind and environment, not a reflection on someone’s soul, their heart or them at all.

She loved to talk about Davey. She loved to share his photo and tell me about what a loving a warm heart he had. Her beautiful son, Davey, was born with Down Syndrome.

Pilot with down syndrome

*not Davey, but a close stand-in

She always wanted a child. Joy and Herb had tried for many years. Joy was a former beauty queen and dedicated musician and singer. Herb was a brass man. Keen to the trumpet, her to the winds, together they would teach children to love music, to be good at music.

Then came Davey.  He grew from a baby to a toddler to a young boy. It was as he was turning into a young man that his generous heart gave out. They loved him so much, and I’m sure they grew to love him more and more each day even after his passing.

The look in her eye would be bright and shiny at first, then as her memories moved forward in time, the twinkle would dim and a veil of grief would sneak in. He was her only son and he was perfect.

Davey was a fighter who would constantly defy the odds. Growing older against doctor’s opinions. Going to school and embracing his life, he was a lover who welcomed every person he encountered with an open heart and compassion. He is an angel and an inspiration.

Joy was a mother who loved her son unconditionally. Her love for him was so great it gave her the strength to be a mentor to and love other people’s children. She tutored many dozens of kids in her years teaching music. The photos they would send her, for years even after going to college and moving away, are a testament of her work. (Any woman who can love someone else’s child as if he or she were her own, in the face of her own loss, is superwoman to me.)

What I took away from Joy and Davey was not a tale of loss, but a tale of dogged determination, hope and love. I don’t know if Joy and Herb are still around, but that doesn’t stop me from thinking of them and thanking them for their love.

For more information on World Down Syndrome Day click HERE

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