To the Mom at the park whose son has Down Syndrome

Dear Mom at the park whose son has Down Syndrome, I’ve been to this park many times since before I can remember. I’ve played in the wading pool. I’ve run around on the grass playing with my imagination and later my younger brothers. I’ve rowed on the lake and run up and down the stadium steps. I’ve walked the lake dozens of times with my dogs. I’ve stumbled across the green grass in the dark with my BFF, both of us inebriated after her bachelorette celebration. I’ve nursed my baby on the benches around the lake, by the theater and by the basketball courts because that’s where he melted down. I’ve taken my baby swimming at the pool. I know this park well, but this was my first day at the playground with my little boy, Bear.

Greenlake Greenery

Bear and I have had such a journey to get here. I remember the NT scan and genetic testing. I opted for it mostly because it was one more opportunity to see him when all I could do was feel his little flutters. I needed that reassurance even though my odds of having a child with down syndrome were low. I needed that reassurance because the last scan I had of my first little guy missed all of his problems because abnormal nuchal translucency wasn’t one of them. I came close to that alternate universe. That universe where my first son survived and had such incredible physical challenges that life would never have been the same in so many good and bad ways. As my little rainbow literally face planted in the sandbox and started eating dirt I looked around in the hopes that no one would be judging me for letting him eat a little dirt before I reeled him in. After two younger brothers I know boys = loud dirt.

Bear loves dirt

It was then that I noticed you.

Your son caught my eye next. It might have been the way the light reflected off the fire trucks parked next to us. Or really it was the halo of loving energy he exuded that caught me, entranced me. He was laughing, having such a good time. Then I noticed something a little different. It took me a few moments of watching him to put my finger on it. Suddenly it clicked and I realized he has that magical extra chromosome. That chromosome that opens hearts and comes at everyone with love. I saw how tired you were, trying to corral him into the stroller as it was time to go. I saw his older brother patiently helping you and him. I saw his older sister resisting leaving because she too was having a ball. I saw his older brother getting behind the stroller to push him around. I saw you watching me watch you. I saw you turn away, maybe embarrassed or feeling self conscious or maybe angry because I WAS staring.

Mama, I want you to know what I was really thinking.

I was really thinking your son has such a lovely soul that shines right through his beautiful face. That crocheted blue hat he was wearing looked so soft and framed his face just right. Its color made his complexion even brighter. I was really noticing his cherry red cheeks, flushed and happy from playing in the crisp morning. I was really seeing his joyous self excited by all the people and commotion. I was really watching how lovingly his siblings interacted with him. I was really thinking to myself, “Wow. He is such a beautiful little boy.”

I want you to know what I was really thinking because I don’t want you to think for one more second that I was doing anything less than marveling at the miracles of your life. I was humbled to be in your presence. You’re a veteran mom and I don’t doubt you have had to fight a lot of battles on behalf of your children. I can only imagine how you felt after your NT scan, or if you even had one. I can only imagine the stares you’ve already faced. I can only imagine the challenges you’ve faced. I hope you know, in your heart of hearts, that you are winning and wonderful and my hero.

With RAWR, Marie

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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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