Category Archives: Uncategorized

Choosing Words to Live By

This was first published in the Akron Beacon Journal on August 27, 2017 Call them slogans, mantras or sayings. Chosen thoughtfully, they can reflect a personal moral code. If your actions, words or even thoughts don’t jibe with your moral … Continue reading

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Titles, Travel and Time

“A rose by any other name would smell as sweet,” said Juliet, referring to her lover’s surname, “Montague,” his family bitter rivals with her own, the Capulets. And while she is right—a name alone cannot change the odor of a … Continue reading

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Raising Dogs and Kids: It’s more alike than different.

This article first appeared in the Akron Beacon Journal on July2, 2017 Raising children is remarkably similar to raising dogs. I’m reminded of this anew, having taken in two puppies in the past year. For more than 30 years, I … Continue reading

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Busting the Myths on Down Syndrome

This column was published on Ohio.com on May 6, 2017. One column only scratches the surface on the topic of life with Down syndrome in the United States in 2017. For more articles, videos and profiles of adults with Down … Continue reading

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A Few Points on Parenting

Published 4/8/17 on Ohio.com A friend only a few years into her adventures as a mom posted on my Facebook wall: “You need to write a parenting manual for me.” I think about parenting a lot and have for a … Continue reading

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Learning About Lyra: Four Years into Our Journey

When Lyra was a few months old, I first wrote an essay titled, “Learning About Lyra.”  Now, more than four years later, we have traveled far down the road of our journey with our daughter. This short piece was published … Continue reading

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Where in the World Is Whoopsie Piggle?

When people are ready to, they change. They never do it before then, and sometimes they die before they get around to it. You can’t make them change if they don’t want to, just like when they do want to, … Continue reading

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Lyra’s Eyes at Three

Whoopsie Piggle can be found on “Down syndrome Blogs,” a site that aggregates Down syndrome blogs by category. One of the categories where Whoopsie Piggle is listed is “Dual Diagnosis” because Lyra was born with congenital cataracts in both of … Continue reading

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Mid-century Mark

“You belong to AARP?” I asked my father twenty years ago when he mentioned a discount he’d received due to his membership. A man who never refuses assistance, I figured he had pulled one over on the retired people’s lobby. … Continue reading

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Presume Brilliance

Two years ago when Max and I attended our first National Down Syndrome Congress (NDSC) convention, Lyra was 11 months old and I was panicky. I felt we had a small window to engage her mind, teach her body to … Continue reading

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Lyra’s Meme: People-First Language

In case you missed it on the Whoopsie Piggle Facebook wall, here is the meme created with the help of my friends, photographer Shane Wynn and text-adding queen Tiffany Stafford. Since October 1, just five days ago, it has been … Continue reading

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That Which Doesn’t Kill the Kid

No one saves us but ourselves. No one can and no one may. We ourselves must walk the path. ~The Buddha That which does not kill us makes us stronger. ~Friedrich Nietzsche Hoping to nap for fifteen minutes in the … Continue reading

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Raising Voters

As a mother I sometimes parent by fiat, with no negotiation. There are small things–such as We never, ever buy items displayed in the check out line at the grocery store. But most are big things related to how we … Continue reading

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Why My Children Are Now Fully Vaccinated

With winter’s departure, the long-dormant mud in the meadow of the K-8 Waldorf school my youngest sons attend is back. So, too, is whooping cough. Six years ago when there was an outbreak at the school, my son Jules, who was … Continue reading

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Seen as Sick: Conjuring Illness to Deny Full Humanity

“Is there a vagina?” I asked the midwife. After a summer of crop-killing drought, rain fell the day my last child was born. For the first time in two months, we turned off the air conditioning, opened our windows and … Continue reading

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Hiking, Dogs, and Fading Angels

“Oh, Lily, someone else is in our park!” I told my bi-black sheltie after a woman attempting to jog on the icy path startled me from my thoughts. Winter’s grip is finally weakening here in northern Ohio, evidenced by emerging … Continue reading

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Where There Is Love

“I don’t buy cartoons for Valentine’s, you know that,” I said, standing in the kitchen. Hugo snatched up my hands in his and lifted them up as though he were going to kiss my fingers. Instead, he began running in … Continue reading

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Two Years This Daughter

  The first two years with a baby with Down syndrome are a lot of work, but then it all gets easier. I have repeated that sentence, spoken by the caseworker from our county’s DD Board when Lyra was only … Continue reading

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Two Years This Family

Two years ago, I wrote about our Thanksgiving with family in northern Michigan. As has been the case for more years than I can remember, last month we again made our biennial pilgrimage up the mitten-shaped state, our van loaded … Continue reading

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Correction: Older Moms Are Having More Babies. Period.

In the essay I posted yesterday, “Some Words About Down Syndrome,” I referred to the long-cited statistic that while older mothers have a higher chance of becoming pregnant with a baby with Down syndrome, most children with Down syndrome are born to … Continue reading

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A Few Words About Down Syndrome

Dear Young Mamas of Children with Down Syndrome: As you all probably know, it is more likely for a woman my age (46 when I had my daughter Lyra) to have a baby with Down syndrome than it is for … Continue reading

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Degrees of Difficulty: Little and Big Kids

Little Kid Hard Once upon a time, I had three little boys each born three years apart. Even before the third boy arrived in the summer of 2000, many a day I could not remember when I last had taken … Continue reading

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Nothing to Fear: Human Rights for People with Down Syndrome

Sarah and I were in Pittsburgh for Quilt Market where we stayed at the downtown Westin. When the elevator stopped on our floor there was a man dressed in business attire already on it. I looked over at him and … Continue reading

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Would I Cry?

When he was a senior in high school, my eldest child, Claude, called me a bad-ass mother (which I mistakenly took as pejorative until he explained the parlance of his generation). It’s true, my parenting mantra is “push and support.” So why, … Continue reading

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Part 3: After a Dying Week

I should be packing. I leave in less than 48 hours to join my oldest son, Claude, in Spain for two weeks of backpacking adventures. It usually takes me one to two weeks to write (and re-re-re-re-re-write) an essay before … Continue reading

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Part 2: Defining and Defying: Discrimination of the Developmentally Disabled

Yesterday, I wrote about three babies in our Down syndrome community, all the same age as our daughter, Lyra, who died in the same week. One of the deaths sparked many national discussions on the issue of organ transplantation and whether or … Continue reading

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Part 1: A Painful Week in the Down Syndrome Community

Real Community, Virtually When Lyra was four months old, I met a woman at a meeting for new parents of children with Down syndrome. A few weeks later, she sent me an invitation to join a Facebook group titled “(’12/’13) … Continue reading

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Lyra’s Latest: In Need of the Next Map

Our home has been temporarily rearranged. The water bowl for the dogs and cats is now commonly found on the kitchen counter while the bathroom trash cans currently reside atop the closed lids of the toilets. A paper grocery bag containing paper recycling … Continue reading

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About (Winter) Time

The Oxford Dictionaries’ 2013 word of the year was “selfie,” which describes the now ubiquitous photos taken with one of the subject’s arms outstretched, not unlike a zombie’s, as he or she snaps his or her own photo with a … Continue reading

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Ms. Lyra Goes to Washington #PasstheABLEAct

Scenario One: Imagine you discover that your great-aunt, who recently died, left you $3,000. She had not told anyone she planned to leave you a small sum of money and so it comes as a complete surprise to you and … Continue reading

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The Mother I Wanted

On a snowy winter’s morning twenty years ago and told me the plain truth, “What you have just done has happened billions upon billions of times in human history and yet I know that right now you feel like the … Continue reading

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Traditions Refashioned

When the big boys were little, my biggest writing project of the year was my holiday letter. Every December, beginning in 1994 just before Claude’s first birthday, I wrote a two-page letter of family updates and book recommendations mixed with … Continue reading

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Comparing Lyra

Historically, I have not been a parent who has put much emphasis upon babyhood milestones. I was not concerned with the boys’ height and weigh percentiles. They held their heads up soon after birth, rolled over by three months, sat … Continue reading

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By Any Other Name

I was named Holly Christensen at birth. Seven years later, I walked into a courthouse in Toledo, Ohio with my mother and her second husband of two years. I came out Holly Slusher. It was the early seventies and along … Continue reading

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Best Laid Plans

6:30 a.m. On a Recent Saturday Morning  “You’re a good mom,” said Max. “Yeah, okay, right. But I need more balance. We all do.” We were in the parking lot at our local Starbucks and had just decided that I … Continue reading

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Farmer Teacher

Oh, for the Love of the Internet Yesterday, I posted a piece on fall in which I began with James Whitcomb Riley’s well-known poem, “When the Frost Is on the Punkin,” and briefly described the geometry teacher who first introduced … Continue reading

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The Love of Fall

They’s something kindo’ harty-like about the atmusfere When the heat of summer’s over and the coolin’ fall is here— Of course we miss the flowers, and the blossums on the trees, And the mumble of the hummin’-birds and buzzin’ of … Continue reading

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You Say Eggplant, I Say Aubergine (+ Moussaka Recipe)

I’ve been thinking about the power of names lately—how names shape who we are and how we think of things. A couple of weeks ago, an old friend from the Waldorf school was offering up eggplant like many a backyard … Continue reading

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My Music Man

Hugo works hard. It isn’t his innate nature, but he does. He has become one of those people who hits his stride best when his life is taut with activity, like a rubber band that is stretched, but doesn’t risk … Continue reading

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Lyra: Our First Year Together

Lifespans in Life The majority of the Down syndrome blogs are written by families whose child diagnosed with Ds is under the age of three. In an online group I belong to, mothers openly wonder why this is the case … Continue reading

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Circling the Wagons

Have Children, Will Travel In the patch of state fair zinnias outside our front door, I have been watching the bees hop from one bright blossom to another on these late summer evenings, the warm air drier than it was … Continue reading

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Lyra’s Latest: Fully Human & Needing a Civil Rights Movement

Your daughter was born with Down syndrome. Do not expect her to read, write, do math or ever drive a car. A physician said these words to the parents of a buoyant baby girl, aptly named Grace, in the days … Continue reading

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Snapshots

Life Changes in a Moment Each time a child is born, a family reconfigures itself. A couple become parents, an only child becomes a sibling. In families with several children, the baby is no longer the baby. We knew and … Continue reading

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Pictures Paint

I have a thousand words or more for each of the pictures from this recent photoshoot of my littlest children. I easily have several thousand words describing my journey with the photographer. But now is the time for the writer … Continue reading

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Lyra’s Latest: Baby Doll to Baby

She Awakens “What’s the word you just used?” I asked Lyra’s ophthalmologist. “Myelinate. It’s a coating over the nerves, just like that wire down there,” he said pointing to the floor where a thick cable traveled a short distance from … Continue reading

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Obstacles to Writing

House Full Up Whoopsie Piggle is currently home to eight people, four dogs, three cats and a singular goldfish who resides in a red plastic sandbox, shaped like a crab, which became a mini-pond two years ago when the lid … Continue reading

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Perpetual Postscripts

I’ve been thinking lately of E.B. White, he of children’s fiction fame for Charlotte’s Web and Stuart Little, who many today may not know was also a fine essayist. A regular contributor to The New Yorker, I once heard in an interview with his … Continue reading

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Screen, Paper, Sound

After I’d spent the summer with my grandparents in Arizona and had returned to my mother’s house in Ohio, my grandmother wrote in a letter to my father and stepmother:                     … Continue reading

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Changing Expectations: Lyra’s Latest

“I recently read that all people with Down syndrome develop Alzheimer’s in their forties or fifties, is that true?” I asked the pediatric geneticist as she examined our two-day-old baby. A few months earlier, I had read a Newsweek cover … Continue reading

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The Spring of Chaos

After what felt like a winter without end, spring has finally arrived. I typically expect November and early December to be the busiest time of the year. For the most part, I don’t think of the holidays as something to … Continue reading

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