Category Archives: Lyra’s Latests

These essays focus more specifically on our fifth child and only daughter, Lyra, who has Down syndrome.

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

Rate this:

Posted in Lyra's Latests, Uncategorized | Tagged , , , | 2 Comments

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

Rate this:

Posted in Lyra's Latests, Uncategorized | Tagged , , , , , , , , , , , | 2 Comments

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

Rate this:

Posted in Lyra's Latests, Uncategorized | Tagged , | 2 Comments

A Year After a Painful Week

It has been a year since I wrote “A Painful Week in the Down Syndrome Community,” about three toddlers who died. Two left suddenly: a boy who contracted meningitis, unrelated to his Down syndrome, and a girl who suffered complications … Continue reading

Rate this:

Posted in Lyra's Latests | Tagged , , , , | 3 Comments

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

Rate this:

Posted in Lyra's Latests, Uncategorized | Tagged , , , , , , , , | 3 Comments

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

Rate this:

Posted in Lyra's Latests, Uncategorized | Tagged , , , , , , , | 4 Comments

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

Rate this:

Posted in Lyra's Latests, Uncategorized | Tagged , , , , , , , | 4 Comments

What Suffering? The Down Syndrome Advantage

I see you and Max acting so bravely, but nobody asks for a child with Down syndrome. I recalled those sugar-coated words of sympathy, spoken by a relative of ours a few weeks after our beautiful, healthy daughter was born, when I … Continue reading

Rate this:

Posted in Lyra's Latests | Tagged , , , , , , , , | 2 Comments

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

Rate this:

Posted in Lyra's Latests, Uncategorized | Tagged , , , , , , , , , , , , , , | 1 Comment

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

Rate this:

Posted in Lyra's Latests, Uncategorized | Tagged , , , , , , , , , , | 3 Comments

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

Rate this:

Posted in Lyra's Latests, Uncategorized | Tagged , , , , , , , , , , , , | 2 Comments

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

Rate this:

Posted in Lyra's Latests, Uncategorized | Tagged , , , , , , , , , | Leave a comment

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

Rate this:

Posted in Lyra's Latests, Uncategorized | Tagged , , , , , , , | 6 Comments

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

Rate this:

Posted in Lyra's Latests, Uncategorized | Tagged , , , , , , , , , , , | 2 Comments

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

Rate this:

Posted in Lyra's Latests, Uncategorized | Tagged , , , , , , , , , , , | 5 Comments

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

Rate this:

Posted in Lyra's Latests, Uncategorized | Tagged , , , , , , , , , , , , , | 1 Comment

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

Rate this:

Posted in Lyra's Latests, Uncategorized | Tagged , , , , , , , , , , , , | 4 Comments

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

Rate this:

Posted in Lyra's Latests, Uncategorized | Tagged , , , , , , , , , , , , , | 13 Comments

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

Rate this:

Posted in Lyra's Latests, Uncategorized | Tagged , | 2 Comments

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

Rate this:

Posted in Lyra's Latests, Uncategorized | Tagged , , , , , , , , , , | 1 Comment

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

Rate this:

Posted in Lyra's Latests, Uncategorized | Tagged , , , , , | 9 Comments

Lyra’s Latest: Where’s the Poop?

Prescript: In July of 2013 we learned about Fruit-Eze. A jam-like product made entirely of fruit, it worked wonders on the constipation that routinely flared up even after Lyra began taking Synethroid. She has a tablespoon each and every morning. … Continue reading

Rate this:

Posted in Lyra's Latests, Uncategorized | Tagged , , , , , , , , , , , , , | 2 Comments

Lyra’s Eyes: The Latest

Seeing Red “We gotta go,” I mouthed to Hugo, who nodded at me while pounding out rhythm and blues on the school piano, playing back up for a couple of guitarists. It was an odd Valentine’s Day. Jules was in … Continue reading

Rate this:

Posted in Lyra's Latests, Uncategorized | 3 Comments

Lyra’s Latest: Finding a Pediatrician or The Continuum of Jewish Women

The day after Lyra was born, I called my obstetrician, who had willingly provided prenatal care and medical back up for my home birth. And I explained that while otherwise healthy, Lyra appeared to have Down syndrome. Within minutes, I … Continue reading

Rate this:

Posted in Lyra's Latests, Uncategorized | Tagged | 4 Comments

Lyra’s Latest: Wee Teeny Peanut

In the roughly three months in which I’ve been writing this blog, the WordPress.com stats reveal far and away that the most popular posts are those about Lyra. While Whoopsie Piggle will never be exclusively about our daughter, I have … Continue reading

Rate this:

Posted in Lyra's Latests, Uncategorized | 2 Comments

Learning About Lyra

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

Rate this:

Posted in Lyra's Latests, Uncategorized | Tagged , , , | 5 Comments

I See You and You See Me

“Your daughter sees like a newborn,” said her eye surgeon, “even though she’s two months old.” Two months old? Isn’t that the same as newborn or at least, newly born? Well, yes, in terms of adjusting to another child in … Continue reading

Rate this:

Posted in Lyra's Latests, Uncategorized | Tagged , , , , , | 4 Comments