Originally published in spring 2015, here’s a story of thanksgiving and hope …
Lake Highlands family finds beauty in life’s unexpected twists
Past a cluster of sculpted bushes, a Skyview Elementary School sign pitched at center, and beyond the quintessentially southern porch, hang paintings inspired by a baby’s damaged brain.
Unabashed color on big, bold canvasses, dynamic lines and patterns that come into focus when you stare —the wall art, like the family who lives here, is complex, multidimensional and awe-inspiring.
In Sarah Greenman’s studio, tiny plants sprout under a lamp. Later, they will go in the backyard garden where Sarah grows much of the produce she uses to blend smoothies for her 5-year-old son, Charlie, who never has been able to eat solid foods.
Art and philosophy books fill shelves — at eye level is M. Scott Peck’s inspirational bestseller, “The Road Less Traveled,” whose famous introductory line reads, “Life is difficult.”
Charlie’s early medical readouts inspired Sarah’s vivid “Neuroplasticity” series seen throughout the house.
“The first image of my son I ever saw was an MRI … a terrifying black sea of brain damage.”
She always has a plan, she says of her creative process, but real art happens when things take unexpected turns.
Sarah was not a visual artist before Charlie. She was an actor, like her husband, Jack, and a designer — a graduate of the Pacific Conservatory for the Performing Arts. And after earning a creative writing degree from Mills College, she started a blog.
But after Charlie was born, stringing a sentence together was too hard.
“I just could not organize my thoughts that way at the time,” she says, so art — the kind made with sloppy paints in audacious hues — became her outlet.
‘I knew something was not right’
“Postmodern bohemian culture” speaks to Sarah, as she words it on her home design blog, La Maison Boheme.
“I’m inspired by those who live apart from conventional society and craft their life and art in a radical manner.”
Somewhere along her eclectic career path, Sarah dabbled in midwifery and assisted in some 60 deliveries.
Pregnant in 2010 with child number two, Sarah decided to have the baby at home. Based on experience, she felt confident — midwives can troubleshoot any problem that arises, “like MacGyvers for babies,” she says.
Pregnancy included the usual medical tests. It was a boy, one revealed, but no red flags.
That August, after tucking son Walker in bed for the night, Sarah gave birth to Charlie in the living room.
“As soon as I saw him,” she says, “I knew something was not right. His head looked too small, and a narrow ridge ran down his face.”
His misshapen head was a symptom of craniosynostosis, a birth defect in which the joints of the skull fuse prematurely, impairing the brain’s development.
And it got worse.
About 90 minutes after he was born, Sarah and Jack drove Charlie to Baylor Hospital.
Shortly after he was admitted, while Sarah held him and attempted to breastfeed, he had his first seizure.
“He had the first one in my arms. Then another and another. He had four in his first 24 hours.”
Charlie had suffered a perinatal stroke. He had cerebral palsy and epilepsy. Doctors spoke of reconstructive surgeries, possible blindness, breathing machines, feeding tubes, terminal incontinence and vegetative states.
“When you think of shock, you think of being in an accident or trauma and your body goes into shock,” Sarah says. “Well, we were in shock. We were mostly quiet and listening really hard to what the doctors were saying, but with bursts of screaming and sobbing.”
The despondency was fleeting, though, Sarah says.
“Because then there was Charlie, and we moved on to being parents.”
Explosion of love
The Friday afternoon before spring break, the Greenmans have spent the past few days cooped up inside, due to a frustrating combination of icy weather, school closings and Charlie’s stomach bug.
A hint of weariness in her voice, Sarah apologizes for her messy house, which, despite an impressive load of Legos dumped on a dining table, is inviting and tidy.
Charlie and his older brother, Walker, both shaggily blond-headed with slate-blue eyes, flank their dad — arms and legs draped across his body, heads nestled in his armpits — on a couch in the television room.
A sleepy-eyed Charlie brightens at the sight of visitors. “Hi!” he says.
He is able to say a few words: Hi. Bye. Yes. No. Mama. Dada. Walker. How are you (or is it who are you)?
“What more do you really need to say?” Sarah jokes. She explains that he understands far more than what he can articulate.
“He knows words. He just can’t make his mouth do it.”
Now a preschooler at Stults Road Elementary in Lake Highlands, a Richardson ISD school equipped with programs and assets to assist students with special needs, Charlie has been learning sign language — so has the rest of the family.
Charlie can’t walk unassisted, and one arm is uncooperative, but his body is sturdy, and his heavy, unwieldy left hand makes for a unique piano-playing technique.
“Maybe he’ll someday invent a style of jazz piano where the left hand is heavy and loose, catching bits of nearby keys while the right hand is all tickle and stardust,” Sarah muses.
He radiates love for all, from practical strangers carting cameras and notepads to Mom and Dad and, perhaps most of all, big brother Walker.
Walker delivers a steady stream of wit and wisdom, endearingly unaware of how deeply he touches those around him.
“There is nothing that gets in the way of love,” Walker says in a video taken by his mom when he was 5. “It hits a wall, boom, right through. If it hits a person it leaves a dot in them and goes elsewhere too,” Walker says, using his hands to simulate an explosion of love.
Based on the comments, Sarah’s blog followers cannot get enough of Walker’s wisdom.
“An amazing soul”, “a sage”, “a wonderful human being”, a “child who represents a new way of thinking”, who “will change the world”, they opine.
While constructing complicated spacecraft from a thousand tiny Lego pieces, Walker seems like a pretty regular kid, complaining about all the writing he has to do at school (he is fine with math and reading, but the writing “gets to be too much”) and the unjust reality that “time flies not when you are writing, but when you are having fun. Ugh.”
Walker is in the first grade at Skyview Elementary School. Skyview is one of those Lake Highlands schools attended almost exclusively by children who live in nearby affordable apartments, despite a large number of single-family households with children in the attendance zone.
Sarah knows of about nine families in her neighborhood who send a child to Skyview.
“We came from Seattle and were used to seeing more diversity in the schools,” Sarah says, noting that she was surprised upon learning the dynamics of Lake Highlands schools.
Skyview is not very racially or socioeconomically diverse: Only 8 percent of the student body is White. 88 percent of the students qualify for free or reduced lunch.
Sarah says neighborhood families were transferring out of Skyview in the name of a better education. “When, in fact, the school is great.”
Today Sarah tries to get the word out to anyone who will listen about her “stellar” experiences at Skyview.
Skyview indeed lacked parental involvement, she says, and based on the stats, Sarah guessed many parents, possibly working long hours for a low income to support their family, did not have time to get involved.
So she did. She tutors Skyview students and next year she will serve as PTA president.
Embracing what is
Sarah and Jack Greenman often say that they are the luckiest people alive.
“The cool thing about Charlie is that he has been a catalyst for so many good things in life,” Sarah says. “No, I would never wish for Charlie to have epilepsy, craniosyntosis, cerebral palsy, but you also don’t need to fix him. Once I got that, I could just be a mom and enjoy this astonishing child.”
Last summer the family traveled to Utah, where Jack and Sarah both starred in the Utah Shakespeare Festival production “Into the Woods.”
Sarah is writing again and taking photos.
In addition to prolifically publishing to her blog, La Masion Boheme, Sarah is a regular contributor to the popular home design website houzz.com. She profiles a wide array of Lake Highlands abodes — more than a hundred of them last year.
“I like observing the ways people move through the world, she says. “What do people love and how does it manifest in their home space?”
Her own home is a constant work in progress.
It is a “moving, living organism,” she says.
A model of form and function, its fascinating, aesthetic rooms are designed to accommodate wheelchair travel.
The Greenmans recently started seeking more holistic approaches to homemaking — the goal is a transition from consumer household to producing household, Sarah says.
They grow vegetables out back and own egg-producing chickens (who live in an extremely chic, secure coop designed by local playhouse builder James Curvan).
They make food from scratch, collect rainwater and sublease their remodeled garage to a young couple in exchange for help with cooking and household tasks.
Charlie’s medical expenses can be extreme.
Jack is a tenured professor at Southern Methodist University whose insurance plan covers some of them.
Richardson-based nonprofit The Warren Center provides valuable physical, speech and nutritional therapy for young children with disabilities.
The organization has been invaluable, Sarah says, though Charlie is now 5 and will not qualify much longer for services.
A family friend, Anne Engelking Smith, set up the website Help Charlie Heal in 2010, where both she and Sarah write about Charlie, and people can donate money when needs arise.
The site helped fund a wheelchair and, more recently, a gait trainer to help Charlie walk, both of which cost thousands of dollars and were not covered by the Greenman’s health insurance.
Life is difficult.
Sometimes Charlie goes through bouts of screaming. “It’s an ear-piercing shriek,” Sarah says.
Sarah’s brother, “a real artist,” Sarah calls him, recently died unexpectedly, and it was a terrible blow.
In times of distress, like years ago when Charlie faced life-threatening surgery, “art comes to the rescue,” Sarah says.
How do you handle it all?
Sarah hears this question a lot.
In typical self-deprecating fashion, Sarah answers, “I do a lot of things half-assed.”
Seriously, she continues, “I give what I’ve got when I’ve got it. I crank out art when I have time. I spend time on things that I think matter, which makes it much easier.”
Jack, who has evenings and summers off, shares the workload.
The key is not having expectations, anticipating the unexpected and living for the moment as much as possible, Sarah says.
“The thing is — you don’t want to miss what is in front of you. That is Walker, Charlie, Jack and the great people in my life. As they are, right now.”