Archives for category: Love

I voted for Jimmy Carter when he ran for office. Unlike most presidents, he is remembered now for what he did after he left the presidency. Instead of retiring to a life of leisure and celebrity, he devoted himself to serving others. I think of him building houses for Habitat for Humanity. He also remained involved in political life through the work of the Carter Center, which monitored elections around the world and reported on fairness and transparency. I had the pleasure of serving on a federal commission that studied electoral reform in 2001 after the debacle of the Bush v. Gore election; the co-chairs of the commission were President Carter and President Gerald Ford. Those were the days when Republicans and Democrats agreed that everyone should vote and every vote should be counted. How things change in only 20 years.

I read this beautiful tribute by James “Chip” Carter to his mother and wanted to share it with you. It appeared in The Daily Yonder.

Chip Carter said at his mother’s funeral:

I want to welcome all of you here and thank you for coming to help my family and to mourn with my family and, mostly, to celebrate a life well lived.

My mother was the glue that held our family together through the ups and the downs and thicks and thins of our family’s politics. As individuals, she believed in us and took care of us.

When I was 14, I supported President Johnson for president. And every day I wore a Johnson sticker on my shirt. And periodically I would get beat up, and my shirt torn, and the button pulled off and my sticker always destroyed. And I would walk the block during lunch from school down to Carter’s Warehouse and my mother would have a shirt in the drawer already mended, button sewn on and the LBJ sticker still applied.

Years later she was influential in getting me into rehab for my drug and alcohol addiction. She saved my life.

When I started making speeches for dad in his political career, I was so nervous I often vomited in the waiting room before we went on stage. And one day after debating seven other children or offspring of candidates for president, I called my mother and told her how nervous I got and she told me something that I have used a thousand times since: She said Chip, you can do anything for 20 minutes except hold your breath.

When I was in the second grade, at Plains High School they had a donkey basketball game in the school building there to raise money for the school, and my mother rode her donkey as fast as it would slowly go, right under the goal, spun around so she was facing its tail, caught the pass and made the winning two points.

She was my hero that night. And she’s been my hero ever since.

A couple years ago mom and I were talking when she said that when Dad asked her to marry her for the second time, she said yes. But she expected him to provide for her a life of adventure. He told her that it would happen. She told me that she had lived on both coasts and Hawaii in the Navy and began their family. Mom said when it was decided they would leave the Navy and return to Plains, she was upset. And the family story is they rode in a car from Connecticut to Plains, Georgia, and when Mom had something to say to Dad she would say, “Jack, would you tell your father …” [Jack is the Carters’ eldest son.]

When Dad ran for office the first time my mother ended up running Carter’s Warehouse. She loved it. Every time he would go on a campaign trip or during the legislative session, she was really pleased to be in the office and be the boss. She told me that when Dad started running for president that the thing that she enjoyed the most were the people that she met across the country. And from working in Carter’s Warehouse, she said I was able to speak the language [of] prices and yields and relate to everyday issues and farm families — especially in Iowa. She said because of that, she’s the one that helped win that election there.

Then as first lady of the United States, always trying to follow the teaching of Jesus and to do what he taught her to do as a guideline, she said, “You will always get criticized by somebody for everything you do, so you might as well do what’s right.” That she and Dad were able to make a positive difference in peoples’ lives and that of so many families too.

My parents’ 77-year partnership is often talked about. Mom was always well-informed on the issues of the day. In the White House, Mom asked Dad so many questions that he finally said that she should attend Cabinet meetings, so she did. And caught a lot of flak for that. But she was then able to speak with authority on issues across our country and the world.

She would often try, and often fail, to get Dad to do what was right politically, and when she couldn’t change Dad’s mind she would repeat to herself: A leader takes people where they want to go, a great leader takes people where they need to go.

Losing the election in 1980 was devastating to us all. My parents were still young, my mother only 53, and they knew they still had more to contribute. They decided they would become missionaries and spent months trying to decide how to accomplish their goal. Finally, they decided as partners to start the Carter Center, which would allow my mother to continue to fight the stigma of mental illness and allow them both to help the poorest of the poor on this earth, as Jesus had taught them.

Mom started the Rosalynn Carter Institute for Caregivers at Georgia Southwestern University to train and support those who help others. At the same time Mom and Dad continued to support Habitat for Humanity, and Mom continued to support the Friendship Force.

She told me that her adventures had led her to more than 120 countries. She had been fly-fishing all over the world. She had met kings and queens, presidents, others in authority, powerful corporate leaders, and celebrities. She said the people that she felt the most comfortable with and the people she enjoyed being with the most were those that lived in absolute, abject poverty, the ones without adequate housing, without a proper diet and without access.

She had probably more adventures than anybody else on earth. Mom was always fun to be with. The Halloween before the pandemic, Mom showed up at Amy’s house. Amy lives on a street which closes down on Halloween, and every house is decorated. Mom was beautifully dressed as a monarch butterfly. The Secret Service were dressed casually, but perfectly, as Secret Service agents.

She proceeded to go up and down the street with her great-grandchildren and grandchildren and go trick or treating up and down and talk to people all over the street. She got back to Amy’s, and she was so excited because she’d been out so much and nobody had recognized her.

After Dad was put in hospice, my mother was racked with dementia, my siblings, my wife and I would stay with them so that there would always be a family member around. One day my mother was sitting with my wife, Becky, and she was reminiscing on what it was like to go and live in Hawaii. And she was talking about learning all of the native dances. And she got up from the sofa, pushed her walker away — which she couldn’t take a step without — and proceeded to do the hula for two or three minutes. She grabbed her walker, turned around, sat back on the sofa, turned to my wife and said, “That’s how you do it.”

I will always love my mother, I will cherish how she and dad raised their children. They’ve given us such a great example of how a couple should relate.

Let me finish by saying that my mother, Rosalynn Carter, was the most beautiful woman I have ever met, and pretty to look at, too. Thank you.

John Merrow has some excellent ideas about how to broaden the base of support in your community, town, or city. Reach out and involve others, people who have little direct contact with the schools. Seeing what the students are doing is a big counterweight to the lies and propaganda of extremist groups. Long before people had television sets, the school was the hub of community life. Friends and neighbors turned out to watch the spelling bee, to see the football games, to enjoy student performances. No one dreamed of opening up corporate chains or using taxpayer dollars to fund competing schools.

Open the link to finish reading the post. If you have more ideas, please comment.

Merrow writes:

The problem with the truism “It Takes a Village to Raise a Child” is that most villagers have no direct connection to children or to the schools they go to. Only about 25 percent of homes have school age children, and in some communities that number drops into the teens. Even if one includes households with grandparents, the percentage probably won’t reach 40. And although support for local public schools is at an all-time high (54%), that may not be high enough to withstand the vicious attacks on the institution by “Moms for Liberty” and other radical right groups. Educators need to do more to win the support of ‘outsiders.’

The 60-80% of households without a strong connection to public education will determine the future of public schools.  Because they vote on school budgets, their opinion of schools, teachers, and students matter.  That’s why educators must develop and adopt strategies to win their support.  It’s not enough for good things to be happening in schools; ‘the outsiders’ need to be supportive, and a good way to win their support is to get them involved.

Because students who are engaged in their work are the best advertisement for public education, adults need to do two things:  1) Make sure the work is engaging and 2) that it involves the world outside the classroom.  Substitute “Production” (meaning that students are actually producingknowledge) for “Regurgitation” (where students parrot back what their teachers have told them).

Start with a public website and a YouTube Channel that features student productions done outside of school–in their community.  Whatever their ages, kids should work in teams, because it’s safer and it’s also how the adult world functions.  Every smartphone is also a great video camera, and so young people can interview adults in their community, then edit those interviews to create oral histories of people and places in their neighborhood–a sure crowd pleaser because everyone loves talking about themselves. When students know that their work is going to be out there for everyone to see, they will go the extra mile to make them as good as possible.  Adults can help set high standards, of course.  

The possibilities are endless:

*Students can create a photo gallery of the residents of their apartment building or their street and then post portraits on the web for all to see and talk about. Include photos of how the neighborhoods have changed over time.

*Art students can sketch portraits of business storefronts, or workers and bosses, also to be posted on the web.

*The school’s jazz quintet can perform at community centers and post the recordings on the YouTube channel.

*Video teams can interview adults in senior citizen centers around a chosen theme (best job, favorite trip, et cetera), to be edited into a short video for the web. Producing short biographies of ordinary citizens will teach all sorts of valuable skills like clear writing, teamwork and meeting deadlines.

*Music and drama students can rehearse and then present their productions at retirement homes and senior centers — but with a twist: involve some of the adults in the process (a small part in the play, a role in selecting the music, and so on).

In our cynical age, we tend not to believe in miracles—inexplicable events that save lives or answer prayers. I don’t believe in miracles, and I don’t believe in ghosts. But there is no other word to describe a story printed in the Boston Globe not long after the famous Boston Marathon.

It’s the story of a woman who lives in Oklahoma City who loves running marathons and had qualified to run in the 2023 Boston Marathon. Rachel Foster and her husband John own an Italian restaurant where she was the head chef. Five months before the Boston Marathon, they decided to take a night off and go for a ride on their electric scooters.

As they were riding, she had some sort of seizure, accelerated, and fell off her scooter. She had 17 broken bones and a catastrophic brain injury. She underwent brain surgery but didn’t wake up. For 10 days, she showed no consciousness.

The doctors told her husband that she had no brain activity, and that if she regained consciousness, she would likely be in a persistent vegetative state. They said there was no hope.

Her husband regretfully agreed to take her off life support the next day.

But then she opened her eyes.

A nurse ran in, and then the doctor, who instructed Rachel to blink twice if she could hear him. She did. He told her to squeeze his hand and move her feet on command. She did. The doctor turned the ventilator off and asked her to breathe on her own. For the first time since the accident, she did.

When a neurosurgeon who had operated on Rachel visited her hospital room a few weeks later, watching as she interacted with the nurses, he was stunned, John said.

“I looked at him and I said, ‘Isn’t this amazing?’ He went to approach her bed and he said, ‘No, this isn’t amazing. This is a miracle, and nothing that I did and nothing that my team did would cause an outcome like this,’” John recalled

Rachel had no memory of the accident. After a month of rehab, she transferred to the Shepherd Center in Atlanta to continue her rehabilitation. She had to learn how to stand, how to walk, how to balance, There, doctors decided that she needed another round of brain surgery “to restructure her skull and alleviate the discomfort.”

The surgery was a success, and as Rachel embarked on a grueling rehabilitation, she set her sights on a seemingly impossible goal — to run the Boston Marathon in April. She had run nine marathons and had qualified for Boston a second time by finishing the 2022 Oklahoma City Marathon the previous spring with a time of 3:17:15.

From the end of January to the end of March, she was in outpatient therapy, and her goal was to run in the Marathon, then only three weeks away. Her husband constantly encouraged her, cheering her on.

In addition, she had a running partner, 66-year-old Tim Altendorf, some three decades her senior. They had met in the local YMCA in spin class. Tim agreed to enter the Boston Marathon and run with her. They had a father-daughter bond. He understood how much it meant to her to run the Marathon.

When she returned to Oklahoma City, she and Altendorf ran together just once, a few weeks before the Marathon. The next day, Rachel suffered a groin injury that forced her to modify her training and bothered her throughout the race. She also continued to struggle with her vision and coordination, and during the Marathon Altendorf would ask how she was feeling….

After such adversity, running the Marathon felt like redemption. Rachel soaked in the cheers along the way, even as the miles took a toll. But her pace quickened as the roar of the crowd grew and she saw John jumping up and down on Boylston Street, shouting so loud he lost his voice. Rachel blew him kisses and said she loved him.

As rain fell, Rachel and Altendorf crossed with a time of 5:44:46.

“We held our hands and lifted both of our hands up in the air,” she said. “No matter what craziness has come at us, here we are. We’re finishing together as friends. It was amazing.”

Rachel said it will take time before she is fully recovered. But after finishing a marathon, she feels no task is too daunting.

“I feel so blessed and thankful,” she said. “I feel invincible. I do believe that it was a miracle. Miraculous things have happened and are happening every day.”

Crossing the finish line at the Boston Marathon!

When Congress debated whether to pass a statute protecting gay marriage, Republican Rep. Vicky Hartzler tearfully pleaded with her colleagues in the House of Representatives to vote against it. Every Democrat and 39 Republicans voted for it, and Rep. Hartzler was distraught.

Her nephew, Andrew Hartzler, disagreed with her vote. He is gay. He grew up in a strict conservative household. He told his parents he was gay when he was 14, and they sent him to conversion therapy. When he finished high school, his parents insisted that he attend Oral Roberts University, thinking that he would not encounter any gay students. They were wrong. More conversion therapy.

He was interviewed on MSNBC, CNN, and other news outlets. Watch him tell his story.

I read this obituary in the Boston Globe, and I found myself wishing that more of us could be like Sabina. By her measure, most of us fall short. But let us honor the incredible example she set. She defines the term “force of nature.”

During two decades as an activist, Sabina Carlson Robillard became a significant leader in humanitarian relief efforts as she insisted that the voices of those being assisted should always be the most prominent in every discussion.

“While you’re listening to me, there are 1.5 million conversations happening on the ground, and I’m here to ask you all how we’re listening to them,” she said at a 2010 conference in Boston about her work in Haiti earlier that year after an earthquake killed more than 200,000 people.

She had turned 22 several weeks before that speech and was a seasoned activist. Years earlier in middle school, she began participating in protests and “was already thinking deeply about people who were suffering throughout the world,” said her father, Ken Carlson.

After being diagnosed with clear cell sarcoma four years ago while she was pregnant, Ms. Robillard, who lived in Cambridge, stayed busier than most of her healthiest colleagues.

She worked as a consultant and an operations officer with humanitarian nonprofits, and helped raise her daughter and stepdaughter while being treated for cancer. Ms. Robillard even texted her academic adviser from her Massachusetts General Hospital room the day before she died on Nov. 16, at age 34, to schedule a meeting a few days later with her Tufts doctoral advisory committee.

“In an unassuming way, she changed the course of how lots of money and people engaged in Haiti,” said her friend Jess Laporte of Waterbury, Vt., a Haitian-American climate and racial justice activist who works with nonprofits.

She worked as a consultant and an operations officer with humanitarian nonprofits, and helped raise her daughter and stepdaughter while being treated for cancer. Ms. Robillard even texted her academic adviser from her Massachusetts General Hospital room the day before she died on Nov. 16, at age 34, to schedule a meeting a few days later with her Tufts doctoral advisory committee.

“In an unassuming way, she changed the course of how lots of money and people engaged in Haiti,” said her friend Jess Laporte of Waterbury, Vt., a Haitian-American climate and racial justice activist who works with nonprofits.

Dan Maxwell, a Tufts University professor who was Ms. Robillard’s academic adviser, first met her when she was a Tufts sophomore.

“She was already well known as a force of nature on campus when she was 18 or 19 years old,” he said.

And though more recently she was a doctoral student, he said, “she was also like a colleague, and in many ways a leader the rest of us followed.”

Ms. Robillard was the lead author for a 2021 report, prepared with Teddy Atim and Maxwell, which called on international relief organizations to adopt a “localization” approach — letting local groups and individuals participate in planning and administration, rather than excluding them, as so often was done in the past.

In October, the US Agency for International Development issued a draft “Policy for Localization of Humanitarian Assistance” that cited the Tufts report and drew upon its findings.

“I was certainly happy to see her live long enough to see that kind of high-level validation of her work,” said Maxwell, who added that Ms. Robillard was defined by her sense of certainty in the field and in her writing.

“She had a North Star,” he said. “She knew where she was going, she knew what was right. While she didn’t force people to agree with her, she could be pretty insistent about what was right and what was wrong.”

The correct approach, she often said, was to listen instead of impose an outsider’s view.

After the January 2010 earthquake in Haiti, “what I saw firsthand was how much Haitians wanted to have their voices heard in the response,” Ms. Robillard wrote for the website of CDA Collaborative Learning Projects, an international nonprofit based in Cambridge for which she worked.

Early on, Ms. Robillard channeled her determination into helping others.

“Sabina was always defined by a tremendous sense of empathy,” her father said. “Her empathy was her sixth sense. She always thought of others before herself, even when she was a very, very young child.”

She also was a multi-instrument musician, an accomplished slam poet, and a leader of Amnesty International and gay-straight alliance groups while in high school.

Initially intending to study creative writing at Tufts, Ms. Robillard was soon involved with humanitarian work, spending months away from the university in 2009 to work as an intern with refugees in South Sudan.

She graduated the following year with a bachelor’s degree in community health and peace and justice studies, and subsequently received a master’s in applied community change and peace building. Tufts later honored Ms. Robillard for her humanitarian work.

For the past dozen years, she worked for nonprofits and aid groups including the International Organization for Migration. She was part of the IOM’s response to the Ebola outbreak in Guinea several years ago, and its response to a cholera outbreak in Haiti.

Fluency in French and Haitian Creole made her particularly effective in Haiti, where she had lived in Cite Soleil, a crowded, impoverished part of the Port-au-Prince metropolitan area. And she used her language skills to elevate the voices of those who lived in Haiti.

A presentation at her memorial service featured her quote: “Why isn’t localized humanitarian aid focused on letting communities determine and lead the work in building their own future?”

Among those she met in Haiti was Louino Robillard, a community leader known as Robi, whom she married in Port-au-Prince in December 2012, and with whom she collaborated.

With marriage came additional roles as stepmother to his daughter, Dayana Robillard, and parent to the couple’s 4-year-old daughter, Anacaona.

Discoloration under Ms. Robillard’s left eye, initially thought to be benign, appeared in 2017. While she was pregnant the following year, tests showed it was a malignant tumor, and the cancer later spread to her lungs.

Continuing to work for four years, even during her final full day alive, “Sabina wrote Ana e-mails over the last four years — 356 e-mails, knowing she wasn’t going to be around,” her mother said.

In addition to her parents, husband, stepdaughter, and daughter, all of Cambridge, and her brother, Ms. Robillard leaves her maternal grandmother, Luba Lepidus of Somerville.

Ms. Robillard’s husband will bring her ashes to Pak Nan Ginen, a park and reforestation project they cofounded in Saint-Raphael, Haiti, where he plans to build a memorial. Because Haiti is severely deforested, “she wished to use her ashes as soil to plant trees,” he said.

Here is a message to you and all my friends!

Be happy!

Be kind to people of different religions as well as those who have no religious beliefs!

Welcome the stranger!

Open your hearts!

Banish cruelty, hatred, and bigotry!

Save some time to laugh every day, even to laugh at yourself!

Happy New Year!

Christopher de Vinck taught English in New Jersey for many years and lives there now.

The following lovely piece appeared in The Dallas Morning News today:

Time ran out. My mother was ravished with arthritis, often tired, but always filled with optimism and joy.

She read The Guardian, The New Yorker, The Atlantic Monthly, The New York Times. She was an author of many books. (Her next collection of poems Journey to the Morning Light will be published by Paraclete Press in September.)

My mother continued to write every day. She had just finished reading Wild Swans: Three Daughters of China, the extraordinary novel written by Jung Chang.

Time ran out. My mother was 99 years old and said one afternoon a few months ago “Always keep in mind the secret name of beauty.”

My mother remembered that a few hours before I was born she was baking a peach pie. She was my first teacher: introducing me to the color of the autumn leaves, and reading aloud Beatrix Potter’s The Tale of Peter Rabbit. We collected wild flowers together in the spring. In grade school my mother gave me Kenneth Grahame’s book The Wind in the Willows. In middle school my mother placed on my pillow Sterling North’s book, Rascal. In high school she introduced me to the books of Loren Eiseley and William Carlos Williams. When I met a girl, my mother gave me her engagement ring to pass along to my wife of 45 years.

My mother endured Nazi occupation in Belgium for four years, nearly died in Dunkirk bombing raids, raised six children here in American…including my brother Oliver who was born with no intellect, was blind, mute, unable to chew.

Time ran out.

“Day by day, we cross over into the future,” my mother wrote in a poem. My mother is buried beside my father in a small Benedictine cemetery in Weston, Vermont.

When I visited my mother at the house where I grew up we sometimes sat on the terrace just outside her bedroom. In spring the wisteria dripped those beautiful purple flowers. In the fall the green leaves protect us. Often a chipmunk joined us on the terrace as my mother and I reminisced about weddings, vacations and peach pie.

“This terrace is a fragment of paradise,” my mother said as the brave chipmunk scurried up beside her chair. As she leaned over, the chipmunk sat up and gently took the peanut from my mother’s hand. A blue jay swooped down from the pine tree and grabbed a peanut that my mother had tossed onto the terrace floor.

We laughed at the quick chipmunk. We talked about the sorrows in the news and about the deer she saw sleeping in the yard at the edge of the woods. We even spoke about God.

“Isn’t it lovely that we are here, at ease, loving the world?”

We are living in a world that is being ravished with war, fires, and hurricanes, political upheavals, hunger, violence that is loose upon the world. It has always been so. But these things are news because they are stains that attempt to mar the beauty of our souls my mother would say. Goodness isn’t news because it is so common.

On the terrace, as my mother fed her chipmunk, she looked up at me and said “You don’t think of it, Christopher, but far ahead yet closer than a heartbeat something immense, wild, holy grabs you and won’t let go.”

Yes, time ran out. My mother’s heart gave up in December. Flowers perish, trees shed their leaves, and fields shrivel into brown stalks and frozen earth.

As my mother and I slowly walked back into her bedroom, as we took our last steps off the terrace arm in arm she looked up and said, “We can always return to a life of simplicity and peace.”

My mother was 99 years old and time ran out. She saw my sadness and then with a sigh and smile as she struggled back onto her bedroom chair she whispered “Christopher, we do not die forever.”

Happy Mother’s Day.

Christopher de Vinck’s latest novels are “Ashes,” (HarperCollins) and “Mr. Nicholas” (Paraclete Press).

Retired Texas educator David R. Taylor reminds his readers that to be anti-abortion is not the same thing as being pro-life.

Those who are actually pro-life treasure each child after they are born by making sure they have good nutrition, good healthcare, good public schools, and a secure home.

In Texas, the anti-abortion forces lose interest in children as soon as they are born.

The Governor, Greg Abbott, the Lt. Gov. Dan Patrick and the two senators demonstrated after the Uvalde massacre of School children that they were sorry as could be, offered lots of thoughts and prayers to bereaved families, but would do nothing whatever to restrict the sale or possession of military-grade weapons to civilians. The 18-year-old killer in Uvalde bought two AR15s on his 18th birthday. The AR15 is not for hunting. It’s for killing. Anyone who enables killers to have easy access to military-style weapons is not pro-life. They are pro-death.

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

At a time when teachers are burned out and leaving, when teacher shortages are growing, it’s useful to learn about a beloved educator who inspired many children, including her own. And, as it happens, she was the mother of philosopher Cornel West.

Journalist Seth Sandronsky writes about Irene B. West here:

Irene B. West was a trailblazer on many levels. As Elk Grove’s first Black classroom educator in what was a rural community, she enjoyed a long career as a teacher and principal.

The Elk Grove Unified School District named an elementary school after her in 2002. West died in April at age 88…

The school now showcases a stunning memorial mural of West and her favorite saying: “If you can’t be a highway, then just be a trail. If you can’t be the sun, be a star. It isn’t by size that you win or you fail, be the best of whatever you are.”