Down Syndrome – Poise and Presence

WP_20160219_12_06_12_Pro — *the very orchid*

May 26, 2017. At the kitchen sink, washing up the breakfast dishes, I realize there is an orchid inches from my face. It bloomed! It’s been ready to pop for weeks, and today was the day. Morgan! Thank you. Hello.

I see her in all things small and delicate.

She was born May 26, 1984 and had 9 months and 3 weeks to be here. 33 years later, Mike and I are sitting on the cabin porch, remembering the Saturday she arrived in our Oakland Avenue upstairs bedroom. Mike recalls when the midwives told us Morgan had physical markers for Down Syndrome, I was so captivated to have her next to me, it didn’t seem to matter what they were saying.

We look out over the fields, study the clouds, sip our beers. Then he tells me a story I had not heard before. The first Father’s Day after Morgan’s death, he was walking the farm. Along the north fence row a deer snorted and stamped, attempting to distract Mike, and sure enough, there in the grasses was a new fawn.

We see her in all things small and delicate.

people-160789_640 — *graphics courtesy of pixabay*

One month ago, I stood in the kitchen raising a glass to a man whose lively engagement with life ensured us a long evening of laughs and great stories. Of four 1971 Ohio State University freshmen assigned to the same dorm floor, one is now deceased.

Kerry Egan, hospice chaplain and author of the just published, On Living, wrote this about those who know they are near to death:

‘…..it isn’t just health that they wish they had appreciated. It is embodiment itself. It’s the very experience of being in a body, something you might take for granted until faced with the reality that you won’t have a body soon….so they talk about their favorite memories of their bodies…And dancing. So many stories about dancing.’

And Ted did dance. One of the apocryphal Ted stories is titled, ‘the Russian Vodka Party.’ A raucous house party burst through its doors, where Ted and I and others danced our way down the porch steps and into the grass.

Another dancing-with-Ted memory. My daughter, Morgan, was born with Down Syndrome, and died at nine months of age from pneumonia due to a heart defect. Mike and I grieved and struggled for a very long time. Ted gave us a much needed reprieve when he dragged us out of our sad house and into a bar where we ended up dancing out into the street once again. Did I ever tell him what a gift that was? I can’t remember that I did. It’s one of those regrets that those of us still living cannot escape when we lose someone we love.

Tia Sillers and Mark Sanders wrote “I Hope You Dance” in 2000, a big cross-over country pop hit sung by Lee Ann Womack. One phrase repeats throughout, and it is my wish for you this day:

‘And when you get the choice to sit it out or dance…..I hope you dance.’

Godspeed, Ted.