Loving a Child with Down Syndrome

This child. Her name is Eurydice.

Eurydice. Courtesy Cristina Nehring. (c) 2012
Eurydice. Courtesy Cristina Nehring. (c) 2012

The following was written by her mom:

Leaving aside the question of whether one can measure happiness in coffee spoons and, more troublingly, compare the real happiness of an existing child to the potential happiness of a nonexisting child, it is a cliché of developmental psychology that kids with disabilities like Down syndrome often outstrip their peers in joie de vivre. Something about their trust, tenacity, and tenderness—as well as their often uninhibited engagement with other people—seems to equip them for lives that are not darker than the lives of sensitive intellectuals but brighter.

Cut to: Paris, fall 2012. I am sitting next to my cherry-lipped, porcelain-skinned daughter, now 4 years old. I step out of the medical transport van that has ferried us home from her preschool and heave her onto the sidewalk. She giggles and extends two fingers to stroke my cheek. Before the driver can pull away from the curb, I gather her against my heart, draw back a few inches, smile in wonder into her radiant smile, and kiss her face and hair and temples as holiday shoppers stop and stare.

There’s more…

Blogging: The First Two Years

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At a recent vacation, blogging between rest and relaxation.

Two years ago today, on Independence Day, I wrote my first post for this blog. Against the firework-lit Manhattan sky, Cubiyanqui came to be.

This blog has been, and continues to be, a challenge, satisfying work and a great source of joy and pride. Also a perfect channel “to share my creative efforts and other obsessions with my friends and the rest of the world.”

In this time I’ve posted 781 times on 109 different categories with 1,281 tags. Through today, the site has had a total of 23,335 visitors from as far away as Viet Nam and South Africa.

Of the many comments those visitors have left, one hateful diatribe stands out  — and I mean hateful — written in response to a political article I posted. Someone didn’t agree with a constitutionally-protected progressive point of view I expressed. The comment, the only one of it’s kind I ever got, was full of racist, xenophobic words, also wishing me a painful death from a certain disease. I deleted it. Sent it to the trash, where that stuff belongs.

The comment that stands in stark contrast to that one was posted in response to an essay I wrote about missing my Dad on his birthday. It was from someone who was missing their own Dad and was searching the internet for a little relief from the ache. It was a brief human connection, the kind possible between reader and writer, born out of a common loss and the shared blessing of having known someone exceptional. That comment is the one I treasure today, on this second anniversary.

Thanks for you support over the last 2 years. I look forward to your next visit.

A Stroll Up Memory Road: Fireflies in the Garden

Image via Wikimedia Commons: "Gluehwuermchen Im Wald" by Quit007 ©2010. Some Rights Reserved

As an adult, I lived in three different houses on one block of Mountain Road. Four, if you count the apartment I shared with my second wife. I now live about a half a mile from there. Most days, particularly in the warmer months, my walking route takes me around these former residences. My emotional relationship to these places vary from the insignificant to the life altering, but because I see them so often, these connections tend to stay in the back of the memory bank. They’ve become part of the background scenery.

These are some of them: my daughter was born on one of these addresses; I lived across the street when I graduated from college; my family had a small garment business in an industrial building — now converted to condos — at the beginning of the street; I faced a “dark night of the soul” at another one of the residences at the end of the Road and lived to see the morning light. That was two and a half decades ago. I also see the house where I last saw my father alive, in a cold day in February, thirty years ago. This house, overlooking the Island of Manhattan and the Hudson River, is vacant. It waits, along with a few of the neighboring properties, a rebirth by redevelopment into high-end housing units. Continue reading

Om

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Today was one of the Ten Best Days of the year for us, weather wise, in Hudson County, New Jersey. The combination of soft breezes, cloudless skies and the agreeable temperature combined to coax more than a few of our neighbors out of their houses. We were persuaded to go for a stroll as well.

Leading Mom, Dad and dog Celeste on our regular loop around the reservoir was our son Nicolas, in the stroller, pointing straight ahead, like the baby general that he is. We came across folks raking the fallen leaves, others cleaning their cars, and some strolling, just like us. Celeste was happiest of all. She loves having the family together, and if we’re together outside, even better.

I was aware that as long as I am able to live in the moment — which I admit I seldom can — today’s walk was perfect in every way. And for the amount of time that I could hold that reality, there was neither fear nor lack but a deep recognition that all was well with the world. My steps were bathed in appreciation and a certain joy as I went walking on a late fall afternoon with my loved ones.

Om

Later, as I was rocking my son to sleep, all of the news of the last few cycles came up in my awareness. The images of destruction and death and loss from the recent suicide bombings in Pakistan and Afghanistan, the senseless shooting at Fort Hood in Texas pile up in my brain. I was shaken. I try not to inflate my gratitude by comparing to those who are suffering today, not being able to know the depth of their pain. But I can’t resist the thought that a parent, who held a son yesterday, like I am holding Nicolas tonight, will not have that privilege again.

On some nights when she takes a turn putting our son to bed, my wife sings James Taylor songs as lullabies for Nicolas. For me, using Om as I rock back and forth on the comfy chair in his room, has worked really well for the last couple of years. It doesn’t immediately put him to sleep, but it does calm him down. Lately, Nicolas has been joining me in the omming. I’ve also been teaching him the word amen. He’s got the first part down.

Tonight, the sacred mantra in Nicolas’ room is a prayer of intercession for those enduring the inexplicable horror wrought by the lost and the frightened on the innocent. Om is also a prayer of gratitude for us able to enjoy a family stroll. Tomorrow’s weather forecast looks even better…