Archives for category: Goodness

Every once in a while, I read a story that is so moving that I have tears in my eyes as I read it. This is one of them. It appeared in The Boston Globe. I know I’m posting too many words (the legal limit is 300 words). I hope the editors at the Globe will forgive me. If they object, I will condense or delete the post.

Just in time for Christmas, a special homecoming 

Yarielis Paulino-Pepin was born into the pandemic with a heart defect and a rare genetic disorder. Now, for the first time in her life, the 17-month-old girl is leaving the hospital to live at home

By Amanda Milkovits Globe Staff,Updated December 24, 2021, 6:37 p.m.

For all 17 months of her life, Yarielis Paulino-Pepin has only known the warm nest of a hospital room, where gentle lullabies tinkle amid the hum, swish, and beeping of machines keeping her alive.

She was born into the pandemic with a heart defect and a rare genetic disorder that left her so weak, sick, and limp that she was unable to breathe or swallow. It was months before her parents heard her cry. She has never felt the wind ruffle her dark, curly hair. She has never felt a raindrop, heard birds in the trees, or gazed up at the moon. Her siblings have never been able to cuddle her.

But now, Yarielis is going home.

It is the day her parents have waited for, the day Yarielis would leave Franciscan Children’s Hospital in Brighton. When she hears her parents calling her name, Yarielis drums her chubby legs on the mattress of her crib. She wriggles in her onesie and rolls over, lifting her head, her face turning from her father, Danny Paulino, to her mother, Aris Pepin. She sticks her tongue out and grins.

“Hello, Daddy’s here!”

“Who’s here? Mama! Did you miss Mami?”

The couple swoop in and lower the sides of the crib, reaching past tubes and monitors to kiss her and tickle her cheeks.

Boston Children’s Hospital saved Yarielis’s life and diagnosed her condition, performing open heart surgery and installing tracheostomy and gastrostomy tubes. Then, for more than a year, the medical staff at Franciscan Children’s gave Yarielis every type of early intervention and therapy available.

Through it all, her parents spent every day on the road back and forth between their home in Providence and the hospitals in Boston, juggling care of four other children in their blended family. Both worked for the Rhode Island Public Transit Authority but were unable to continue; keeping their family strong through the distance and uncertainty became an all-consuming, full-time job. Their older children wondered if they’d ever meet their baby sister, as COVID restrictions prevented them from visiting her in the hospital.

Months ago, when it seemed impossible, her mother made a wish for Yarielis to be home for Christmas. Then, the little girl began to gain strength. The nurses at Franciscan saw her happy and loving personality begin to blossom.

On Wednesday, a few days before Christmas, her mother’s wish came true.

Her pregnancy had gone so well. And then, at 36 weeks, Aris said, her doctor diagnosed her with polyhydramnios, an excessive accumulation of amniotic fluid, and determined the baby had an abnormal heart.

A few days later, on July 20, 2020, Aris gave birth to Yarielis. She could barely breathe. Yarielis was immediately intubated and rushed to Boston Children’s.

When Aris and Danny finally saw Yarielis again, her tiny 6-pound, 2-ounce body was under a tangle of tubes and wires, her small face half-hidden by the intubation.

No one knew why Yarielis was sick. Her parents were distraught. Aris sought solace at the hospital chapel, praying for her daughter and begging forgiveness for whatever she might have done to cause her baby to be sick. “I said, ‘sorry’ to God a thousand times, maybe I did something bad in my life,” Aris said.

It was no one’s fault. After extensive genetic testing, Yarielis was diagnosed with Kabuki Syndrome, a rare congenital disorder that affects many different organ systems.

The name comes from the distinct appearance of people with the disorder, as if they are wearing makeup used by actors in Japanese kabuki theater, which emphasizes wide-set eyes, highly arched eyebrows, a small jaw, and a flattened nose. The disorder delays growth and causes a broad spectrum of intellectual disabilities or delays, heart problems, low muscle tone, difficulty swallowing, and immune deficiency.

Dr. Olaf Bodamer, director of the Roya Kabuki Program at Boston Children’s Hospital, reassured Aris and Danny. This is not typically an inherited disorder: it is caused by a spontaneous change during pregnancy that affects about 1 in 32,000 births worldwide.

The genetic condition is nearly nonexistent in people of Caribbean descent, such Yarielis’s parents, who are Dominican. While there are 500 to 600 people diagnosed with Kabuki Syndrome in the United States, Bodamer said there could be more who have not undergone genetic testing.RELATED: Facial recognition zeroes in on genetic disorders

While there is no cure for Kabuki Syndrome, children can show development over time, and there is hope for drug therapies on the horizon that could help improve learning and overall development of muscle tone, Bodamer said.

Yarielis happened to be in a place where her genetic disorder was recognized and where a team of specialists could help her family care for her.

The National Organization for Rare Disorders, or NORD, recently designated Boston Children’s Hospital, Massachusetts General Hospital, and Brigham and Women’s Hospital as one of its Rare Disease Centers of Excellence, making them part of a small network of cutting-edge facilities that offer specialized care and disease management for people living with rare diseases.

While patients with Kabuki typically do not require 24-hour care, Yarielis has a more extreme case, Bodamer said.

She was diagnosed with a critical congenital heart defect called tetralogy of Fallot, and needed open heart surgery when she was a month old. Constantly on a ventilator, she received a tracheotomy at two months old. She has eye abnormalities known as coloboma; they don’t know yet what she can see.

Over time, Yarielis has begun to gain strength. The doctors have told her parents that her heart is working well and that the tracheostomy will not be permanent. It is giving her time to get strong enough to breathe on her own.

Her parents call her their “Kabuki warrior.” And they turned to each other to help her fight.

“It was heartbreaking at the beginning,” Aris said, “but it’s a process.”

“We pray together every night. We both get on our knees right before bed and hold hands,” Danny said. “And we talk to God and say, ‘Give us strength.’ ”

Aris and Danny sought out other families, to learn what was ahead for them and their daughter. They found people on Facebook, where they could talk about medications and therapies, and how their children were progressing.

Aris also used her TikTok channel, @yourrealfantasy, to document Yarielis’s journey with photos and videos, hoping to inspire other families of children with special needs. She wanted people to see that children like Yarielis can be happy and loved; her followers grew to more than 250,000.

But some commenters have been cruel. “I’ve seen many people telling me on social media, ‘Why do you expose your daughter? You shouldn’t expose your daughter. How can you enjoy life exposing your daughter when she’s suffering?’ ” Aris said. “She’s not suffering. I just explain to people that I don’t need to hide my daughter just because she’s disabled. I’m very proud of my daughter.”

Later, alone with Yarielis during one of their last nights at Franciscan Children’s, Danny admitted his fears.

Here, all Yarielis has ever known is love and acceptance. But the world, as beautiful as it can be, is also a hard place, he said. Will other people see that she is lovable? Will she be bullied or rejected?

“We bring them into the world, you know, they don’t ask to be born. So it’s our responsibility to raise these children and care for them, no matter what age they are,” Danny said. “You know how cruel this world is, but it’s your job to protect them and take away all the negativity and always surround them with a positive attitude.”

Staff members at Franciscan Children’s Hospital lined the hallways and held a bubble parade for Yarielis as she was discharged from the hospital and headed home.

Staff members at Franciscan Children’s Hospital lined the hallways and held a bubble parade for Yarielis as she was discharged from the hospital and headed home. JESSICA RINALDI/GLOBE STAFF

Before Yarielis could go home, the staff at Franciscan Children’s taught Danny and Aris every step of her care — how to use the ventilators, the oxygen tanks, the monitors; how to care for the tracheotomy and gastrostomy; how to administer her medication and milk around the clock and trouble-shoot alarms.

Finally, each parent had to stay at the hospital for 48 hours, solo, to show that they could handle everything Yarielis could need.

They barely slept, but they passed the test. “When you are keeping your baby alive, you will do anything,” Danny said.

As they packed up the room, Danny and Aris took final instructions from their case manager, social worker, and nurses. They signed discharge papers.

Aris was suddenly overcome. “I’ve been waiting for this day for so long,” she says. “This is tears of happiness.”

She dressed Yarielis in a pink-and-white sweater with a matching hat and boots. She cut the toe of the leggings to fit the monitor that tracks Yarielis’s heart and oxygen, and covered her in a pink-and-white quilt handmade by her grandmother.

Nurse practitioner Stephanie Hopkins cuddled Yarielis for the last time. “Her parents are as ready as they can be,” Hopkins said. “It’s exciting to think of her at home with her siblings and to see her home for the holidays with her family, something that people take for granted.”

The baby smacked her lips, her way of blowing kisses. “Are you going to miss everybody?” Aris asked her.

As the EMTs wheeled Yarielis out of her room, nurses and staff cheered, waving bubble wands in the hospital’s traditional “bubble parade” for children who are discharged. Yarielis passed by with her right hand raised like she was the queen of England.

“God bless everyone,” Danny said to every person he passed. “Thank you for everything you guys did.”

Jasleen Pepin, 5, jumped up and down as she spotted the ambulance carrying her baby sister coming down the street.

Jasleen Pepin, 5, jumped up and down as she spotted the ambulance carrying her baby sister coming down the street.JESSICA RINALDI/GLOBE STAFF

Yarielis’s uncle, Abel Pepin, and her brothers Dionyanny Paulino,17, and Jossem Peña-Pepin, 13, had just finished taping balloons and a welcome banner across their front porch when the ambulance from Boston pulled up to their house in the Mount Pleasant neighborhood of Providence.

Yariel Paulino-Pepin, 3, barely waited for the EMTs to open the ambulance doors before he bounded inside. Jasleen Pepin, 5, danced, waiting to see her sister, and shouted: “She’s so cuuuute!”

Mother and child emerged carefully from the ambulance, accompanied by EMTs carrying medical equipment. Aris carried Yarielis up the steps and into the house, and placed her into the large gray crib that had been ready since before she was born.

Large plastic flowers and letters spelling “Princess Yarielis” decorated the wall over her crib in the living room. The ventilators, IV stands, oxygen tanks, shelves of medical supplies, a shopping bag filled with medication, and a new refrigerator to store them — everything was ready for the littlest child.

“Welcome home, princess,” Aris said.

Then, as Aris and Danny bustled about with the medical machines under the supervision of a respiratory therapist, the two younger siblings clung to the crib railings to get as close as possible to their baby sister.

They touched her nose and her chubby hands, showed her toys, and tried to make her smile. They squealed when she grabbed their hands and kicked the crib railing. But, when Yarielis suddenly turned red, opening her mouth in a silent, tearful yowl, the children screamed for their mother to help her.

Aris calmly dealt with the ventilator alarm and suctioned Yarielis, who quieted. The children crept back to the crib railings again. They plinked on a toy xylophone, mimicking the sound of her alarms. They took turns with their mother’s stethoscope and listened to each other’s hearts.

All they had known of Yarielis were photos and videos, and their parents’ explanations about the baby’s illness. Boston Children’s Hospital had produced a special book for them about Yarielis and her condition. Now, here she was, and no matter how many times their parents and older siblings pulled them away, the two children could not resist her. They were not afraid. They were enthralled.

At last, when the wires and tubes were untangled, the machines were humming, the first round of medication successfully administered, when they’d changed her diaper and removed her warm sweater, Aris and Danny paused at the crib and took in the sight of their youngest daughter. Yariel joined them.

Propped up against a curved pillow, Yarielis gazed up at them. She was in her own home, with her family, for the first time in her life.

They don’t know what’s ahead for Yarielis, but right now, for the first time in 17 months, they are all together.

“You know that you are home, baby,” Aris cooed to her baby daughter, who smiled back. “You know that you are home.”

Aris talked to Yarielis as Yariel squeezed in to get a better look at his baby sister. Danny spoke to the respiratory therapist who had come to oversee the setup.

Aris talked to Yarielis as Yariel squeezed in to get a better look at his baby sister. Danny spoke to the respiratory therapist who had come to oversee the setup.JESSICA RINALDI/GLOBE STAFF

The Washington Post published a story about a teacher-librarian who launched a community tradition of feeding children and families during the Christmas holidays.

Elementary schoolteacher Turquoise LeJeune Parker was a few days away from the start of her holiday vacation when she received a text message from the mother of one of her second-grade students.

The parent wondered if Parker knew where she could find food for her children during the school’s two-week winter break because her refrigerator and pantry were almost empty. Her kids relied on free school breakfasts and lunches to get them through the day.

Parker, now a library teacher for 387 students at Lakewood Elementary School in Durham, N.C., said she felt like crying on that phone call six years ago.
“This mom told me she wasn’t worried about herself, but she couldn’t let her kids go without food for those two weeks,” she recalled. “I told my husband about it, and we knew we had to do something.”

Parker and her husband, Donald Parker, a carpenter, immediately went out to shop for groceries for the woman and her family, but then they thought about all the other families.

“If one parent was going into the holiday break with no food in the house, we knew there must be others,” said Turquoise Parker, 34.

Although the Durham Public Schools district regularly worked with a nonprofit to provide food-insecure families with weekend groceries, the program couldn’t serve every child, she said.
On Dec. 14, 2015, Parker decided to text everyone she knew asking for donations to buy enough holiday groceries for all 22 students in her class at the time.

“I’m trying to send each of my 22 students home with a bag of non-perishables to help their families with them being out for Christmas break,” she wrote. “If you know anyone wanting to donate, let me know! I’ll go pick it up!”

Within a couple of days, she had $500.
“It really took off and made such an impact for these families that I knew I had to keep going,” Parker said. “Food is something that no one can do without. It’s not only a basic human need, it’s a human right.”

The second year, she said she raised $1,000 and the program grew from there. Last year, more than $55,000 came in.

This year, from Dec. 8 to 11, Parker and a group of 70 volunteers once again bagged groceries to send home with students at the beginning of their winter break.

This time, $106,000 was raised through fundraisers, a charitable foundation and social media. It was enough to help every child at 12 elementary schools in her school district, said Parker, noting that about half of the district’s students qualify for free or low-cost school lunches.
About 5,200 students took home bags filled with a two-week supply of cereal, bread, peanut butter, pasta, granola bars, oatmeal, beans, mac ‘n’ cheese, canned chicken, fruit and vegetables, she said. The groceries were ordered online this year at Costco and delivered to the gym at Lakewood Elementary.

Parker said she named the project “Mrs. Parker’s Professors’ Foodraiser,” because she considers all of her students to be “little professors.”

“I’m a part of their family now and they’re a part of mine,” she said. “We’re all learning together. They help me as much as I help them…”

Parker is relieved that the program now helps thousands more students, and it runs with the dedication of many volunteers.

During her first year of raising funds to feed about two dozen students, she heard from Durham attorney T. Greg Doucette, who asked how he could help. Doucette now pitches in to help coordinate the project every year, she said.

“This has become a community effort — not mine alone — and that’s how it should be,” Parker said.
Doucette said that when he first signed on to help, he didn’t anticipate that bagging groceries would become a recurring project. But when he learned about food insecurity in his community, he wanted to do something to lessen the need, he said
….

Her mother, Marian Thompson, was a single mom with three children who got a doctoral degree in education and worked for 43 years as a teacher and school counselor, she said.

“Oh, my gosh, did she ever inspire me,” said Parker, noting that she often accompanied her mother to work as a preschooler.

“I saw everything she did for kids at school, and from age 4, I also wanted to become a schoolteacher,” she said. “At home, I’d line up all of my teddy bears and baby dolls and teach them.”
After she graduated from North Carolina Central University in 2010 with a degree in public administration, she took her first teaching job at Estes Hills Elementary School. Since 2019, she’s been the library teacher at Lakewood Elementary, although she prefers to call herself a social justice teacher, she said.

“Food inequality is systemic and that’s not okay,” Parker said. “Giving children food for their Christmas break is not a lavish thing — this is food we’re talking about. The well-being of our community is directly related to the well-being of our children. We have to fight for each other.”
It’s a lesson she has thought about often since giving birth to her first child, Madame, four months ago, she said.

I received a notice a few days ago from a scholarly organization, informing me that Mike Rose had died. Mike was a beloved teacher, scholar, and author. He had keen empathy for working people. He taught at UCLA. I met him a decade ago, and we became friends. You may have met him through such books as Lives on the Boundary, or Why School?, or Possible Lives.

Other people knew Mike far better than I, and I invite you to read what they wrote about him.

His literary agent, Anna Sproul-Latimer, who worked with Mike on his latest book, wrote a deeply personal article about him.

She wrote, as part of a longer piece:

Five days ago, just hours before what was probably going to be the last of our four editor meetings, my beloved client Mike Rose dropped dead. He woke up at dawn, sent me a quick email, walked into his kitchen, and—bam, there went the cartoon anvil of fate. Spontaneous cerebral hemorrhage. He was 77.

Mike didn’t die right away. Or maybe he did? Depends on how you define it. When the cops broke down Mike’s door Friday morning, twenty-four-plus hours after he went down, he was still breathing, but most of him had already left. In the bloodbath of his brain, only the brainstem remained functional. It kept chugging away, obliging, with the breathing and the circulating, until Sunday night…

Dramatic irony: I knew something was wrong the instant Mike missed our Thursday afternoon editorial call. He was the most neurotic man I have ever met. He would never ever ever.

For some reason, though, I didn’t take the thought seriously. I told myself he probably just got confused by technical difficulties. That he was out of pocket. That he’d call later.

“Or maybe he’s DEAD!” The idea floated around like a diaphanous scarf, something designed for a witchy Instagram aesthetic and little else. I ran its weightless silk through my fingers. I emailed it to him, as a tease. “I’m beginning to worry you’re dead!”

When I woke up Friday morning, the scarf was strangling me…

I loved Mike Rose so, so much, even though he also might have been the single most aggravating client I’ve ever had. There was no way in hell any commission I’d ever receive on his book would financially justify the time demands of our relationship, let alone the exhaustion.

I stayed in the relationship anyway. Happily. It brought me so much joy.

Never in the depths of orgiastic moroseness could Charles Schulz have imagined a neurotic ruminator more determined to wrest disappointment from his every success than Mike Rose. Neither for all the wonder in Schulz’s childlike soul could he have dreamed up a character more warm, tender, careful, open-minded, sincere, brilliant, tenacious, and faithful.

You should read Mike Rose.

Read the last two entries on his blog. The last is called “The Desk,” and it’s the story of a magical desk he owned as a child that allowed him to imagine other worlds. Sproul-Latimer described it this: “It is a tender, quiet, devastating personal essay about growing up in squalor in South Central Los Angeles. He describes a childhood at once desperately lonely and overcrowded to the point of suffocation.”

Fred Klonsky blogged about the deaths of both Mike Rose and Bob Moses in recent weeks. Mike Rose’s next to last blog post was about Bob Moses, written last May, before Moses’ death.

Klonsky wrote:

When I was 34 and decided I wanted to teach I was introduced to a world of brilliant thinkers who were entirely new to me. Few were more brilliant than Mike Rose. Mike Rose touched me in a way few others did. His class roots. His understanding of students whose courageous struggle to learn got them labeled in the worst way. His respect for work and labor as an intellectual enterprise. His book, Lives on the Boundary, still has an honored spot in my collection.

Mike Rose had a unique voice. He was not in the thick of policy battles. He worked on a different level, seeking to understand people and their lives.

Congressman Jamie Raskin was one of the lead authors of the impeachment resolution. His beloved son Tommy died by suicide on New Years’ Eve. This is the tribute Jamie and his wife Sarah Bloom Raskin wrote about Tommy, died on December 31, a week before the Trump mob stormed the U.S. Capitol.

It begins:

TAKOMA PARK, M.D. — Congressman Jamie Raskin and Sarah Bloom Raskin today released the following statement about their son Thomas (Tommy) Bloom Raskin:

“On January 30, 1995, Thomas Bloom Raskin was born to ecstatic parents who saw him enter the world like a blue-eyed cherub, a little angel. Tommy grew up as a strikingly beautiful curly-haired madcap boy beaming with laughter and charm, making mischief, kicking the soccer ball in the goal, acting out scenes from To Kill A Mockingbird with his little sister in his father’s constitutional law class, teaching other children the names of all the Justices on the Supreme Court, hugging strangers on the street, teaching our dogs foreign languages, running up and down the aisle on airplanes giving people high fives, playing jazz piano like a blues great from Bourbon Street, and at 12 writing a detailed brief to his mother explaining why he should not have to do a Bar Mitzvah and citing Due Process liberty interests (appeal rejected).

“Over the years he was enveloped in the love not only of his bedazzled and starstruck parents but of his remarkable and adoring sisters, Hannah the older and Tabitha the younger, a huge pack of cousins, including Jedd, Emily, Maggie, Zacky, Mariah, Phoebe and Lily, Boman and Daisy, and Emmet and spoiled rotten with hugs and kisses and philosophical nourishment from his grandparents Herb and Arlene Bloom, Marcus Raskin, Barbara Raskin, and later Lynn Raskin, the best aunts and uncles a mischievous ragamuffin could ask for, including Erika and Keith, Kenneth and Abby, Mina, Noah and Heather, Eden and Brandon, and Tammy and Gary, and a cast of secondary parents who wrapped him in adoration and wildly precocious conversation like Michael and Donene, Ann and Jimmy, Kate and Hal, Kathleen and Tom, Katharine and David, Judy, Reed and Julia, Dar and Michael, David and Melinda, Angela and Howard, Helen, Sheila, Mitchell, Will and Camille, Phyllis, Shammy, Khalid and Zina.

“With all this love infusing Tommy’s world and soul, girls quickly came to fancy this magical boy who always made time for the loneliest kids in class and frequently made up his own words to describe feelings and parts of toasters — and, to be clear, he took a strong liking to girls too, these omnipresent magical lovely girls he found who always had a profound beauty radiating from within. Tommy was raised on a fine Montgomery County Education, which took him through Takoma Park Elementary School, Pine Crest Elementary School, Eastern Middle School, and Montgomery Blair High School (with a frolicking detour to Ecole Active Bilingue Jeannine Manuel in Paris for one family sabbatical year where he learned French, tried to teach himself Japanese, and insisted on travel adventures through North Africa and the rest of Europe), but his irrepressible love of freedom and strong libertarian impulses made him a skeptic of all institutional bureaucracy and a daring outspoken defender of all outcasts and kids in trouble. Once when third-grade Tommy and his father saw a boy returning to school after a weeklong suspension and his Dad casually remarked, ‘it looks like they let finally let him out of jail,’ Tommy replied, ‘no, you mean they finally let him back into jail.’

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“At Blair, Tommy’s adult persona began to take shape: he co-founded Bliss, a life-changing peer-to-peer tutoring program and spent hours tutoring fellow students in Math and English; made wonderful friends he lavished attention on; became Captain of the Forensics Club and a savagely logical and persuasive orator in the Debate and Extemporaneous Speech Club where he had to be constantly reminded by his teammates that the purpose of high school debate tournaments is to score points and not convince people of the truth or change the world. He was active in the Young Dems and recruited dozens to get involved in the 2012 Obama reelection effort. On Prom Night, he threw a dinner party for 24 fellow students, including classmates who had no date that evening, and they all went to prom together as a group. He hated cliques and social snobbery, never had a negative word for anyone but tyrants and despots, and opposed all malicious gossip, stopping all such gossipers with a trademark Tommy line — ‘forgive me, but it’s hard to be a human.’

“Above all, he began to follow his own piercing moral and intellectual insights looking for answers to problems of injustice, poverty and war. A Bar Mitzvah from Temple Sinai, he taught a Sunday School with Heather Levy for two years at Temple Emmanuel, often substituting his social-struggle analysis of the Exodus story for teachings on the Hebrew alphabet. He ordered and devoured books on the Civil War and Maryland’s history in it, World War II and resistance to Nazism, Jewish history, libertarianism, moral philosophy, the history of the Middle East conflict, peace movements, anything by Gar Alperovitz on the decision to drop the atom bomb on Hiroshima and Nagasaki, and anything by Peter Singer on animal rights. He began to pen these extraordinary essays and articles that now add up to well over 100 as well as write plays and extremely long polemical poems, which he eagerly performed for audiences astounded by his precocious moral vision, utter authenticity of emotion, and beauty of expression.

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“At Amherst College, he majored in history, helped lead the Amherst Political Union, intellectually discredited the egregious Dinesh D’Souza who turned to pathetic insults when Tommy destroyed his argument from the audience with a simple question (even before D’Souza was soon to be convicted of federal campaign finance crimes), won the Kellogg Prize, created and performed one-act plays with his social dorm mates, and wrote a compelling senior thesis on the intellectual history of the animal rights movement. Spending his summers voraciously reading and soaking up all the wisdom to be had at his eclectic self-procured internships at the CATO Institute with Doug Bandow, J Street, the Institute for Policy Studies, ARC of Montgomery, Compassion Over Killing, and for Professor Frank Couvares, Tommy became an anti-war activist, a badass autodidact moral philosopher and progressive humanist libertarian, and a passionate vegan who composed imperishable, knock-your-socks-off poetry linking systematic animal cruelty and exploitation to militarism and war culture. He recruited gently and lovingly — but supremely effectively — dozens and dozens of people, including his parents, to the practice of not eating animals, and it will be hard to find anyone his age who has turned more carnivores into vegans than him. (He also cheerfully opposed sectarian holier-than-thou sanctimoniousness among a handful of vegans he met and would say, ‘I’m working for a vegan world, not a vegan club.’) A prolific and exquisitely gifted writer, he came to publish essays and op-eds in the Nation, the Goodmen Project, Anti-War.Com and other outlets. After his Amherst graduation, Tommy went to the Friends Committee on National Legislation to work on stopping the war in Yemen and on Middle East policy, and spent a year publishing more remarkable essays and articles (soon to be available to you) and launching a book of political philosophy offering a sweeping animal rights critique of Locke, Mill and classical liberal social contract theory.

“In 2019 Tommy went to Harvard Law School. He lived up in the attic of the home of Michael Anderson and Donene Williams, his Dad’s beloved law school roommates, and made more remarkable friends. He studied constitutional law with Noah Feldman, criminal law with Carole Steiker, and property with Bruce Mann (Elizabeth Warren’s husband); he loved the systematic thought and debate dynamics of law school but reported it to be like half an education because the moral philosophy component was somehow left out. Rather than read endless lists of long cases, why not have students read clear comprehensive statements of what the law is and then talk about what the law should be? So while zealously promoting his newfound favorite game — Boggle — to rescue his classmates and himself from the stress and anxiety of law school, he also pushed them to engage with social problems and found a strong affinity group in the Effective Altruists. He spent last summer working quite brilliantly as a summer associate at Mercy for Animals and found a knack for actual lawyering.

“This fall Tommy not only took a full complement of his second-year law classes, including Disability Law with Michael Stein which he loved, but, at the suggestion of his beloved Professor Steicker, became a Teaching Assistant with Professor Michael Sandel in his ‘Justice’ Course at Harvard. As a teacher, Tommy devoted great time to teaching his section of the class — working on his astonishing lectures and jokes, and meeting endlessly with his dozen students on Zoom, finding what was precious in their work and teasing it out. He loved his students and they loved him back. Not content with giving half of his teaching salary away to save people with malaria by purchasing mosquito nets with global charities, when the semester was over and after his grades were in and the student evaluations were complete, he made individual donations in each of his students’ names to Oxfam, GiveDirectly and other groups targeting global hunger. When I asked him why he did this, he quoted something that he loved which Father Daniel Berrigan said about Dorothy Day: ‘she lived as though the truth were true.’ Tommy said: ‘I wanted them to see that the truth is true.’

“We have barely been able to scratch the surface here, but you have a sense of our son. Tommy Raskin had a perfect heart, a perfect soul, a riotously outrageous and relentless sense of humor, and a dazzling radiant mind. He began to be tortured later in his 20s by a blindingly painful and merciless ‘disease called depression,’ as Tabitha put it on Facebook over the weekend, a kind of relentless torture in the brain for him, and despite very fine doctors and a loving family and friendship network of hundreds who adored him beyond words and whom he adored too, the pain became overwhelming and unyielding and unbearable at last for our dear boy, this young man of surpassing promise to our broken world.

“On the last hellish brutal day of that godawful miserable year of 2020, when hundreds of thousands of Americans and millions of people all over the world died alone in bed in the darkness from an invisible killer disease ravaging their bodies and minds, we also lost our dear, dear, beloved son, Hannah and Tabitha’s beloved irreplaceable brother, a radiant light in this broken world.

“He left us this farewell note on New Year’s Eve day: ‘Please forgive me. My illness won today. Please look after each other, the animals, and the global poor for me. All my love, Tommy.’”

UNICEF released a ranking of nations in terms of child wellness. The United States is one of the lowest ranking among the advanced nations of the world. The rankings do not include test scores. It’s important to understand that the test scores are the result of child wellness, not a cause. If we expect to improve children’s academic performance, we should focus on their well-being, which is a summary of causal factors. I have often said that when we are comparing students from different nations, we should look at child poverty, access to healthcare, food security, access to high-quality pre-K, and other indicators of child wellness, not test scores. This important report does that.

See the report here.

Tom Scarice, superintendent of schools in Madison, Connecticut, has advice for his community.

He writes:

In February of 2016 something magical took place in the scorched arid region of California known as Death Valley. Following years of drought and unrelenting heat, one of the hottest and driest places on the planet experienced a breathtaking phenomenon. Millions of seeds lying dormant buried under the dusty desert soil collectively burst to life, carpeting the floor of this barren stretch with over 20 species of magnificent wildflowers for miles and miles in what is now called a “super bloom”. These flowers have laid dormant for years, silently waiting for the conditions to call them back to life.

As our connections and sense of purpose begin to escape us during this global crisis, nerves fray and a sobering reality settles in. It is becoming increasingly likely that school, the place of connections and purpose for our children, and the soul of any community, will be closed for the remainder of the year. For now, it will be replaced by a virtual facsimile that could never replicate the warmth of a teacher’s words, the sense of belonging our children crave. Sadly, it is also likely that we will all eventually know someone who contracts this virus, and perhaps, we will all know someone who we may lose to this virus. It is precisely in times like this where we can see the very worst and the very best in each other.

The generation we serve in our schools today was born under the shadow of 9/11, raised in terror of Sandy Hook, seduced by the perverted temptations of social media and dopamine hits, and now finds itself facing a generational crisis, all the while aching for the adults in their lives to show them their very best, in the most challenging of times. Their childhood innocence, a natural endowment, has been violently stripped. They are looking for the very best in us right now. They are counting on us.

We tend to find exactly what we are looking for in life. If you want to see the best in each other, now is the time to look for it. It is there. Perhaps it is dormant, like the millions of wildflowers below the surface of Death Valley. Right now, the conditions are right. The conditions all around us summon the very best in us, even if it lays dormant, back to life.

There are acts of kindness happening all around us, big and small. There are people subordinating their comforts for the welfare of others. If we fasten our attention to these people, and to their examples, perhaps our measure of humane kindness can outpace the spread of this contagion. The very best in us is there if we look for it. If you look around, you’ll see countless young eyes watching us, counting on us.

I want to assure you that those who care for your children every day in our schools accept the responsibility to help our community through this crisis. It is time to see our very best. If we can find a way to meet the needs of your child, perhaps it will then cascade some semblance of normalcy and solace to your family, and then perhaps throughout our entire community.

The very best in us may be out in the open, or, like the millions of wildflowers beneath the floor of the desert, it may lie dormant. Now is the time for our best to come out. Perhaps they have never counted on us any more than right now.

Last week, John Merrow posted his congratulations to readers for matching up with an algorithm that selected them to make a substantial contribution to a worthy organization.

In this post, he cancels his congratulations and explains why he was in error–or just kidding around.

 

The family of a 2-year-old with limited mobility needed a wheelchair but could not afford the cost of a wheelchair, $20,000. The Farmington, Minnesota, public high school “Rogue Robotics Team” did it. 

Great and talented kids. No one mentioned theirvtest scores.

 

The boys’ volleyball team at Kepler Neighborhood School, mostly 7th and 8th graders, went for a run over a bridge near the school. They spotted a woman attempting suicide, dangling from the bridge. They raced to ask their coach what to do. He said, “Tell her that her life matters,” as he dialed 911.  The boys ran to the woman and told her again and again that her life matters, that people care about her, that she must not give up.

She pulled herself up. She did not commit suicide. The boys persuaded her to go on living.

According to the NAEP data, Fresno schools and students are among the lowest performing in the nation. Their scores are very low.

What do you think of those kids in Fresno now? Put another way, what do you think about using the scores to judge the worth of these boys?

Thanks to Nicholas Kristof for writing these stories and for recognizing that the economic and social supports needed for the hero of the story should not depend on philanthropy and charity.

Nicholas Kristof wrote about an 8-year-old boy who won the New York State chess championship for his age group. He learned chess only a year earlier at his public school, PS 116, in Manhattan. He and his family, Nigerian refugees, were living in a homeless shelter. As a result of Kristof’s reporting, the family has been showered with gifts, including a rent-free apartment for a year and a GoFundMe collection of $200,000, plus scholarships for the boy, Tani, at elite private schools. The family accepted the home, is giving the money to help others, and turned down the scholarships because Tani likes PS 116.

From the first column:

“In a homeless shelter in Manhattan, an 8-year-old boy is walking to his room, carrying an awkward load in his arms, unfazed by screams from a troubled resident. The boy is a Nigerian refugee with an uncertain future, but he is beaming.

“He can’t stop grinning because the awkward load is a huge trophy, almost as big as he is. This homeless third grader has just won his category at the New York State chess championship…

“So we should all grin along with Tanitoluwa Adewumi, the newly crowned chess champion for kindergarten through third grade. He went undefeated at the state tournament last weekend, outwitting children from elite private schools with private chess tutors.

“I want to be the youngest grandmaster,” he told me.

“Tani’s family fled northern Nigeria in 2017, fearing attacks by Boko Haram terrorists on Christians such as themselves. “I don’t want to lose any loved ones,” his father, Kayode Adewumi, told me.

“So Tani, his parents and his older brother arrived in New York City a bit more than a year ago, and a pastor helped steer them to a homeless shelter. Tani began attending the local elementary school, P.S. 116, which has a part-time chess teacher who taught Tani’s class how to play.”

Knowing that his family had no money, the school waived the usual fees so that Tani could participate in the program.

https://www.nytimes.com/2019/03/16/opinion/sunday/chess-champion-8-year-old-homeless-refugee-.html?smid=nytcore-ios-share

From Kristof’s second column:

“Tanitoluwa Adewumi, age 8, skidded around the empty apartment, laughing excitedly, then leapt onto his dad’s back. “I have a home!” he said in wonderment. “I have a home!”

“A week ago, the boy was homeless, studying chess moves while lying on the floor of a shelter in Manhattan. Now Tani, as he is known, has a home, a six-figure bank account, scholarship offers from three elite private schools and an invitation to meet President Bill Clinton.

“I think I am still dreaming,” said Tani’s dad, Kayode Adewumi. “I hope I don’t wake up….”

“After my column about this hard-working family, a GoFundMe drive raised more than $200,000 for Tani, his parents and his brother. A half-dozen readers offered housing — in a couple of cases, palatial quarters. Immigration lawyers offered pro bono assistance to the Adewumis, who are in the country legally and seeking asylum. Three film companies are vying to make movies about Tani.

“Heartfelt thanks to all my readers for this generosity: I truly have the best readers…

“The Adewumis have decided that they will not spend a cent of the $200,000 GoFundMe money on themselves. They will take out a 10 percent tithe and donate it to their church, which helped them while they were homeless, and the rest will be channeled through a new Tanitoluwa Adewumi Foundation to help African immigrants who are struggling in the United States the way they were a week ago….

“I asked them how they could turn down every penny of such a huge sum….

“I’m a hardworking guy,” Mr. Adewumi explained. He has two jobs: He drives for Uber with a rented car and sells real estatethrough Brick & Mortar. Someone has now offered him a free car so that he can keep more of the money he makes driving, and Tani’s mom was just offered a job as a health care aide at a hospital…

“The family was tempted by the offers of full scholarships at top private schools. But Tani and his parents decided that while he might accept such a scholarship for middle school, he would be loyal and stick with the public elementary school, P.S. 116, that taught him chess and waived his fees for the chess club.

“This school showed confidence in Tanitoluwa,” his mom, Oluwatoyin Adewumi, told the P.S. 116 principal, Jane Hsu. “So we return the confidence.” And then, overcome with emotion, the mom and the principal hugged.

“There’s a risk that a triumph like this leaves the impression that charity is the solution rather than a way to fill gaps: Fundamentally we need comprehensive systems in place to support needy kids. We would never build a bridge or subway with volunteers and donations, so why entrust an even more urgent cause — homeless children — to charity?

“Tani thrived because everything fell into place: a good school, a dedicated chess teacher and devoted parents committed to taking their son to every chess practice. The challenge is to replicate that supportive environment for all the other Tanis out there with public services and private philanthropy alike….”