Double the Maternal Love: Twin Sisters Foster and Adopt Together

Originally Published in the Atlanta Journal-Constitution

Everyone deserves to feel wanted and loved.

This isn’t just a mantra for twin sisters Patricia and Priscilla Moses. It is an answer. Why have they fostered over 20 children and adopted three? Because, they say, everyone deserves to feel wanted and loved.

Their parenthood journey is not one they expected, but they’re grateful and believe God has mapped out every step. Fostering has been riddled with harrowing experiences for the Moses twins, but it is also what led them to find their forever family.

Patricia and Priscilla, 52, are known to their friends as Patty and Prissy. In the spring of 1989, the ladies moved from Alexandria, Louisiana, where they were born and raised, to Decatur. They were hoping for good jobs and new adventures. With her degree in rehabilitation from Louisiana State University, Patty first landed a job as a rehab aide, then as a rehab administrative assistant and then as a medical biller. Prissy, who had dreams of getting married and starting a family, found a job as a presser at a dry cleaners, followed by a couple of different staff positions at Children’s Healthcare of Atlanta at Scottish Rite.

The sisters shared an apartment and spent their free time together. They ate out often and frequented concerts at the King Center. They especially loved the gospel singers.

They had lived in Georgia for three years when they received a call from the Department of Children and Family Services in Louisiana. It was a Thursday. The agency said if they didn’t pick up their cousin’s children, a 1-year-old boy and a 3-year-old girl, they would be wards of the state by Monday. By Saturday, they were a family of four, driving back to Georgia.

Embracing parenthood

The next few years were a big transition for all of them.

“Sharnika and Corey were loved, but their mom was struggling,” said Patty. “When we brought them to our home, they were filthy. They had impetigo (a highly contagious skin infection) and no sense of routine.”

The sisters’ days of eating out and living the single life were replaced with potty training, disciplining and entertaining little ones. Patty and Prissy made constant efforts to assure the kids they were safe and had everything they needed. Due to their mom’s drug issues, the children were used to bouncing around from place to place, unsure of where they’d sleep or when they would eat again. Corey went through a phase of hoarding food behind his bed. Patty and Prissy consistently reassured the boy that they’d always have plenty of food for him. Corey also struggled with anger management. Patty and Prissy were focused on helping the kids overcome their mental hurdles through church and counseling.

The foursome squeezed into the sisters’ Redan Village apartment together for a year or so before settling into a small ranch home in Decatur. From the outside, it may have seemed different, having two sisters play the role of parents together, but inside those walls, their family was just like any other.

“We grew to call them both mom, even though we still talked to our mom,” said Sharnika Harrison, now 31. “They took such good care of us. They kept us clean. They kept us in church and provided for us. We sang in the choir. They were very affectionate and gave us lots of hugs and kisses, help with our homework. We felt safe and loved.”

Patty and Prissy raised the kids like their own for seven years, until their mom was better and able to reunite with the children.

“I hated to come back,” said Harrison. “I wanted to stay with Prissy and Patty, but mom was in a good place and it was just time. But every day was so different without Patty and Prissy, and sometimes I wonder what life would be like had we continued to grow up in their home. I probably wouldn’t have had a baby at 18. And I probably would have gone to college. But they made a difference in me that stayed with me. They showed me patience, and I practice that with my own five sons now. My tenderness and ability to give unconditional love comes from them.”

The sisters cried nearly the entire drive on I-20 from Louisiana back to Georgia, longing for laughter and silliness in the back seat.

“It was a very painful time,” said Patty. “We loved them so much. Returning to an empty home was heartbreaking.”

The sisters reentered the social scene. They went to shows, out to restaurants and each had a handful of dates, but there was a yearning inside them both.

“We missed having children in our home,” said Patty. “We knew we had to do something. We took in our family the first time, but we knew we could do the same for other kids. When you’re single and want to have a child, you may think you can’t. But you bring that child home, you fall in love and it’s yours. You are the one feeding them, caring for them in the night when they’re sick, drying their tears when they’re sad. You are their parent.”

Drawn to those who need them

The sisters contacted Georgia’s Division of Family and Children Services and followed the protocol of classes to become foster parents. They welcomed their first foster child in 1999 and have cared for over 20 foster children since. They’ve raised children born with drug addictions, children who were sexually abused and children who were physically abused. They once cared for twin baby girls with identical leg fractures caused by their own father.

Though trauma covers many of the children like a blanket, the sisters’ love is a shield, providing a sense of safety from the life the kids once knew. Patty and Prissy create structure, safety and normalcy. They teach and require manners, they are sticklers about eating vegetables and they take the children to church, New Beginning Full Gospel Baptist Church in Decatur, where the sisters were Sunday school teachers for over 16 years.

In 2011, Patty and Prissy received a call from DFCS about a baby girl in the DeKalb Medical Neonatal Intensive Care Unit who had been diagnosed with cerebral palsy. The baby had no one visiting her. Her young mother abandoned her because she said she did not want a slow child. Devastated by this, the sisters began visiting the baby regularly.

“Someone needed to be there holding her and loving her,” said Patty. “She needed that physical interaction. We’d go and lay her against our chests for skin to skin. By the time we left the hospital with her when she was 4 months old, I think she believed she belonged to us.”

They named her Kennedi Ariah and decided to call her by her middle name.

Soon after adopting Ariah, Patty was laid off. The sisters adjusted their budget and made do on Prissy’s salary, allowing Patty more flexibility to shuttle Ariah to her many weekly doctor and therapy appointments. Ariah was on oxygen and had tube feedings when she left the hospital. She outgrew those issues, but still receives physical, occupational and speech therapies. She uses a wheelchair much of the time, but her moms encourage her to practice walking in hopes that she’ll gain more independence.

“We were told she would have a very low IQ and that we shouldn’t expect too much from her, but we’ve always insisted that no one should put a limit on her capacity to learn,” said Patty. “For example, though we were told she wouldn’t be able to, we made it our goal to teach her her name, her address and our information.”

Ariah, now 9, knows all these details. Her dark eyes smile brightly behind her blue framed glasses as she recites her phone number aloud then cheers proudly.

Ariah’s occupational therapist, Monica Mangram, has seen the young girl since she was 6 months old. Every Tuesday, Patty drives an hour to be at Therapy Works in Lawrenceville by 7 a.m. so Ariah can work with Mangram for an hour before heading to school.

“I’ve watched Patty and Prissy become more and more resourceful over the years, always seeking new ways to make life better for their kids,” said Mangram. “I’ve watched them take in these children who they have no blood relation to and love them like their own, giving them the very best of themselves. I admire their selfless hearts.”

Ariah attends public school in DeKalb County. She transferred schools two years ago because the special education services she needs were moved to another elementary school. However, Patty remained the Parent Teacher Association president of Ariah’s former school, Bob Mathis Elementary, for two school years.

“We didn’t have kids who attended there, but I volunteered to be on the PTA while Ariah was enrolled and my word is my bond, I always follow through,” said Patty. “I wanted to help when there weren’t many parents stepping up, and I especially want to advocate for special needs students.”

A family grows, then struggles

Ariah is Patty and Prissy’s oldest child. The sisters have fostered then adopted two others. Kristopher is 8. He joined the Moses family at 6 months old. His mom had psychological issues, his father had drug issues and they lost custody. Like the other children, Kristopher knows he’s adopted, and he feels lucky that he was chosen by Prissy and Patty. He’s an energetic boy with a sweet disposition and a newfound interest in soccer. He hopes to play on his first team in the spring.

The baby of the family is Karrigan, 2, a pigtailed little girl with an affinity for anything Minnie Mouse. She was delivered at home to a teenage mother and has been with the Moses sisters since she was 5 days old. Her adoption was finalized this November, just two days before Ariah and Christopher were baptized in the church. It was a big weekend for the family. Their grandmother, Patty and Prissy’s mother, Barbara Glasper, flew in from Louisiana to celebrate her grandchildren.

“I love these babies and I’m so proud of my daughters,” said Glasper. “They’re wonderful parents and I wish I could be more like them.”

The sisters have learned to balance the parenting and work responsibilities, but their rhythm was thrown off in 2017 when Prissy experienced a series of strokes.

She was working as a front desk concierge at Children’s Healthcare of Atlanta at Scottish Rite at the time, a job she treasured for a decade.

“Everyone knew Prissy,” said former co-worker Carrie Sewell, a security guard at Children’s Healthcare. “She was always so silly, so funny and caring, and she was so good at her job. She remembered the faces and names of not just patients but their family members, too. She made them feel comfortable, and people always went to her, because she always had the answer or would get them whatever they needed.”

But one day, Sewell noticed that her friend Prissy wasn’t engaging in their usual banter but was instead asking the same questions over and over.

“I thought she might be kidding around with me, it was so unlike her,” said Sewell. “It wasn’t till the next day when I realized what had happened.”

Prissy had a stroke. Her doctor didn’t believe her at first, but after a series of tests, it was confirmed that she had actually experienced multiple strokes. That’s when life took another sharp turn for the sisters.

“I had to leave my job and I was so sad because I really loved it there,” said Prissy. “I miss meeting new people the most. I’d talk to them, listen to their stories and sometimes could relate, since I had kids at home. But I lost my ability to read and my co-workers were having to help me so much. Now at home I do laundry and minimal cooking — nothing like the big meals I used to love to cook. Patty does the cooking now. And I can’t drive anymore.”

The sisters have learned to balance the parenting and work responsibilities, but their rhythm was thrown off in 2017 when Prissy experienced a series of strokes.

She was working as a front desk concierge at Children’s Healthcare of Atlanta at Scottish Rite at the time, a job she treasured for a decade.

“Everyone knew Prissy,” said former co-worker Carrie Sewell, a security guard at Children’s Healthcare. “She was always so silly, so funny and caring, and she was so good at her job. She remembered the faces and names of not just patients but their family members, too. She made them feel comfortable, and people always went to her, because she always had the answer or would get them whatever they needed.”

But one day, Sewell noticed that her friend Prissy wasn’t engaging in their usual banter but was instead asking the same questions over and over.

“I thought she might be kidding around with me, it was so unlike her,” said Sewell. “It wasn’t till the next day when I realized what had happened.”

Prissy had a stroke. Her doctor didn’t believe her at first, but after a series of tests, it was confirmed that she had actually experienced multiple strokes. That’s when life took another sharp turn for the sisters.

“I had to leave my job and I was so sad because I really loved it there,” said Prissy. “I miss meeting new people the most. I’d talk to them, listen to their stories and sometimes could relate, since I had kids at home. But I lost my ability to read and my co-workers were having to help me so much. Now at home I do laundry and minimal cooking — nothing like the big meals I used to love to cook. Patty does the cooking now. And I can’t drive anymore.”

‘Where she goes, I go’

With Prissy unable to work, Patty stepped up.

“I went to work as a security guard for a while, but I was so worried about what was happening at home,” said Patty. “It never failed that I’d get a phone call from Prissy saying ‘Don’t worry, but the kitchen caught fire,’ or a neighbor would call on Prissy’s behalf because she couldn’t remember how to dial my number.

“We had a Krispy Kreme fundraiser through Ariah’s school last year. We collected money for selling the doughnuts, and it was sitting on the counter. Prissy accidentally started a fire on the stove and the money was burned up. I had to call the Federal Reserve to get that money replaced. It was over $200. I left the security job after that. I couldn’t take the risk of something happening to Prissy or the kids because I wasn’t with them.”

Prissy’s brain damage is permanent. Some days are especially confusing for her. Doctors continue to monitor a blood clot on the back of her brain stem that is inoperable due to its location. She takes blood thinner and she tries to avoid getting worked up in hopes of reducing her risk of having another stroke.

Prissy receives disability, but the sisters are still out of money at the end of each month. They maintain a tight budget and prefer Goodwill to any other store. They don’t eat out often or go see movies with the kids, which are things they would love to do together. Regardless, they are happy and their children are too. Their shelves are cluttered with books and games, faces of stuffed animals peeking out here and there. Photos of all their foster children cover their refrigerator and a coffee table. The sisters are settled into this life with their three children and are glad they get to raise them side by side.

“You know, I think we’ll end up together for the rest of our lives,” said Patty. “I know Prissy is the one person who will always have my back, and she knows I have hers. I don’t know if any man could understand our bond. They say twins are different and it’s true. Where she goes, I go and that won’t ever change.”

As for their family, Patty and Prissy say they are complete with the three kids and they won’t be fostering or adopting more children. Then the sisters exchange knowing glances and laughter, as identical as their faces, erupts as Patty says “but sometimes the Lord will surprise us.”

About this story:

I discovered this story while looking for a special needs family to sponsor for Christmas, a mission I’ve pursued over the past two years through the Maximus Janton Foundation, a non-profit I run in honor of my son. Talking with Patty and Prissy over the past month has inspired me greatly. They have so much love to give and their selflessness is unparalleled. It’s been a true gift to, along with a slew of donors, provide an extra special Christmas for them this year. I delivered 15 wrapped gifts for the kids (my favorite is the American Girl doll with the blue glasses and a wheelchair, just like Ariah has) and we gifted the family nearly $1,000 in gift cards for groceries, as well as a trip to dinner and a movie for all five of them. I’m so grateful to this family for warming my heart this season and for allowing me to write their story, which they shared so openly. If you would like to assist these sisters in anyway, please e-mail me (keri@kerijanton.com) and I’ll be happy to help.

Boy with Spinabifida thrives and inspires

Originally Published in the Atlanta Journal-Constitution

Samuel Armas has no recollection of the moment he became famous. Why would he? He wasn’t even born when it happened.

It wasn’t until the fifth grade when his entire class Googled themselves that he realized he had a Wikipedia page. He always knew about the “Hand of Hope” photo that captured him in utero at just 21 weeks gestation, undergoing experimental surgery to repair a lesion on his back caused by spina bifida. But the weight of the picture never struck him until that day in school.

Snapped by freelance photographer Michael Clancy in an operating room at Vanderbilt University Medical Center in 1999, the image captures Samuel’s tiny hand alongside the finger of surgeon Dr. Joseph Bruner. It appeared on the cover of USA Today and went viral, casting Samuel in the role of pro-life poster child before he took his first breath 15 weeks later.

It also launched a controversy over what exactly happened in the operating room that day. Clancy claimed the fetus reached through the incision in the mother’s uterus and clasped Bruner’s finger. He has since written a book about the picture and become a pro-life activist.

Bruner claimed he manipulated the hand in the course of the surgery, pointing out that the fetus was anesthetized. He has refused to publicly discuss the photo since 2009.

For Samuel, the debate is irrelevant. The 16-year-old is more interested in maintaining his grades in the gifted program at Alexander High School, winning his next Atlanta Junior Wheelchair Hawks basketball game and tussling with his little brothers, Ethan, 12, and 10-year-old Zachary, who also has spina bifida.

Most importantly, Samuel is living proof that a disability isn’t always a disadvantage. Every life has purpose and anyone can dream big.

Samuel Armas has no recollection of the moment he became famous. Why would he? He wasn’t even born when it happened.

It wasn’t until the fifth grade when his entire class Googled themselves that he realized he had a Wikipedia page. He always knew about the “Hand of Hope” photo that captured him in utero at just 21 weeks gestation, undergoing experimental surgery to repair a lesion on his back caused by spina bifida. But the weight of the picture never struck him until that day in school.

Snapped by freelance photographer Michael Clancy in an operating room at Vanderbilt University Medical Center in 1999, the image captures Samuel’s tiny hand alongside the finger of surgeon Dr. Joseph Bruner. It appeared on the cover of USA Today and went viral, casting Samuel in the role of pro-life poster child before he took his first breath 15 weeks later.

It also launched a controversy over what exactly happened in the operating room that day. Clancy claimed the fetus reached through the incision in the mother’s uterus and clasped Bruner’s finger. He has since written a book about the picture and become a pro-life activist.

Bruner claimed he manipulated the hand in the course of the surgery, pointing out that the fetus was anesthetized. He has refused to publicly discuss the photo since 2009.

For Samuel, the debate is irrelevant. The 16-year-old is more interested in maintaining his grades in the gifted program at Alexander High School, winning his next Atlanta Junior Wheelchair Hawks basketball game and tussling with his little brothers, Ethan, 12, and 10-year-old Zachary, who also has spina bifida.

Most importantly, Samuel is living proof that a disability isn’t always a disadvantage. Every life has purpose and anyone can dream big.

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'Absolute shock’
A staff photographer at The Tennessean, Michael Clancy was ecstatic about his first freelance assignment with a national publication. USA Today hired him to photograph Julie’s surgery.

The reality of shooting a surgery hit the 43-year-old the night before. He hoped the risky procedure would go smoothly. He also hoped he wouldn’t get queasy.

When Clancy was ushered into the operating room, he was assigned a place to stand and ordered not to move. He was positioned at the back of the room, behind Julie’s head. He counted 13 people in the room, including the medical staff and the USA Today reporter. He was nervous and the tension was palpable. The room quiet as a whisper as the surgery began.

Unable to move closer, Clancy swapped out the lenses on his Canon EOS 1N film camera to get a variety of shots. His movements were calm and deliberate as he watched the surgeon wield the miniature instruments, specially made for fetal procedures. Near the end of the operation, while Julie’s uterus was outside of her body, Dr. Bruner briefly stepped away. The surgeon said something inaudible to Clancy but it made the staff giggle and Clancy exhaled, happy for a moment of levity. Then something pulled his attention.

“Out of nowhere, without anyone near it, I saw the uterus shake and watched in disbelief as a fist burst through the incision,” said Clancy. “I felt like I was the only one who was amazed. It was like the medical staff had seen it before. Dr. Bruner looked at me, then we both looked back at the fist and watched as it flailed back and forth. Dr. Bruner grabbed the tiny hand and I immediately reacted. I pulled my camera to my face, held the motor drive and fired as fast as I could. I could see the baby’s hand squeeze Dr. Bruner’s finger. I was in absolute shock.”

Clancy shot four frames before someone grabbed him around the waist from behind.

“I didn’t know who it was, but I said, 'What the hell,’” recalled Clancy. “I had just captured the earliest human interaction ever photographed. I witnessed something truly amazing.”

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Hand of Hope
Julie and Alex saw their baby’s first photo with the rest of the world on Sept. 7, 1999. There, on the cover of USA Today, was a picture of their baby’s hand, completely emerged from Julie’s uterus, his fingers alongside the surgeon’s finger. Tears ran down their faces as they marveled over the image and fielded phone calls from family and friends.

“I instantly knew how special that photo was — and not just to us,” said Julie. “We wanted to show the value of our son’s life, disability or no disability, and that we’d do anything for him because we value him. We accomplished what we wanted.”

In the 17 years since the Hand of Hope photo was taken it’s still recognized worldwide. It was quickly adopted by the pro-life movement, appearing on posters at rallies. And the Armas family has become involved with the effort, speaking out against abortion locally and internationally.

The photo was not without controversy. Over the years Bruner has challenged Clancy’s retelling of the events. He did not respond to requests for comment.

Regardless of which account is accurate, for the Armas family the photo is an affirmation of what they knew all along. Their baby boy was fearfully and wonderfully made.

5

'It’s not so bad’
Samuel Alexander Armas was born screaming on Dec. 2, 1999, at 36 weeks gestation.

His back was healed and he was healthy. He stayed in the holding nursery for six hours as a precaution and was brought to his mother’s room around 11 p.m. Alex, who had already given Samuel two bottles in the nursery, was asleep in the chair by Julie’s hospital bed. She chose not to wake her husband as she held her firstborn for the first time.

She unwrapped his swaddle and admired his tiny 5-pound, 11-ounce body. He was perfect.

Samuel learned to walk around 21 months of age and has worn braces on his lower legs to support his ankles ever since. He’s had to undergo various surgeries over the years on his bladder, his heel chord tendon and the muscles around his eyes.

Despite the challenges and the risks, Julie and Alex knew they wanted another child, so they returned to the infertility doctor and underwent intrauterine insemination again.

A year later, the Armas’ second son, Ethan, was born healthy and typical. Then, a year later, Julie discovered she was pregnant again.

Fifteen weeks into her pregnancy, they discovered the child had spina bifida. Overcome with disbelief, Julie and Alex immediately put wheels in motion to return to Vanderbilt for the fetal surgery, but that never came to be. The National Institutes of Health had taken over the experimental surgery as part of a study in 2003 and the Armas family wasn’t selected for the procedure.

Julie and Alex welcomed Zachary on July 18, 2005. His back was surgically closed the day after he was born, and a shunt was placed in his head a week later to treat hydrocephalus.

When Julie first learned of Zachary’s diagnosis, she stayed in bed for three weeks. She didn’t know how she was going to care for three children, two with special needs.

“I thought, Oh my gosh, we’ll be a two-wheelchair family,” said Julie. “Now here we are, and so what? It’s not so bad.”

6

'I thank God’
It’s a school night, and the Armas family is bustling through their weeknight routine. Julie is cooking a new recipe for shepherd’s pie, when Alex walks through the door and greets her with a kiss. Zachary sits at the dining room table doing his homework. Ethan is building a Lego structure. Samuel, handsome and smiling, does what most teenagers do — texts on his cellphone.

Samuel makes his way to the leather sectional sofa in the living room. He plops down as if exasperated and reaches toward the button to recline his seat. Before he can press it, Zachary walks over, drops his crutches to the floor and reaches to his big brother for a hug. The two embrace in a cross between a hug and a wrestling hold. Moments later, Ethan runs over and piles on top of his brothers. Laughter erupts and their mother looks on, shaking her head as if to say “somebody’s going to get hurt.”

Julie calls her family to the table for dinner. Zachary, who uses a wheelchair outside of the home, leaves his crutches to the side of the table and uses his upper body strength to shimmy to his regular spot, on a bench beside Ethan. The family bows their heads as Ethan prays.

“Dear Lord, thank you for the food we’re about to eat. Thank you for keeping us safe and please help anyone who’s hurt or sick or anything like that. Thank you for everything, amen.”

After dinner, Samuel makes his way up the stairs to his bedroom. His gait is distinct as he sways left to right. The family refers to it as the “spina bifida swagger.”

His room is royal blue with red accents and sports relics on display. There’s a picture of Babe Ruth, baseballs signed by former Braves players and trophies and medals for wheelchair basketball. He and Zachary both play for BlazeSports. Samuel received the Positive Athlete of Georgia Award in the adaptive athlete category this fall. In the corner are the new adaptable snow skis he got for Christmas.

Beside the bed is Samuel’s Bible. Inside the black and blue leather cover is a date scrolled in his handwriting: June 20, 2007, the day he was saved. Samuel’s faith plays a big role in how he copes with his condition.

“I feel like I make strong decisions because I’m strong in God,” said Samuel. “I think that’s important with having a disability. I realize how bad it could’ve been, and I know how much he’s blessed me. Without spina bifida, I wouldn’t know so many of the people I know today and I wouldn’t have wheelchair basketball, which has completely changed who I am. You may think of spina bifida as a disadvantage, but I thank God for it every day.”

Samuel celebrated his 16th birthday in December. He and his friend Greta hosted a joint party with about 35 friends, a DJ and a bonfire. He doesn’t have his license yet, but he has his learner’s permit. He drives to church and to his grandparents’ house often. In his free time he goes to the movies with his friends and shoots hoops in his driveway. Though he stays busy, he’s open to having a girlfriend — he’s just waiting for the right one.

Samuel’s a sophomore now, but he already has his sights set on earning a scholarship to a major college for wheelchair basketball. He practices with his team every Saturday at the Shepherd Center in Atlanta. He flies up and down the court in his chair, making passes and practicing free throws. He loves the speed of the game and the excitement that rushes over him when he makes a shot. He thrives in big games, and has won a few for the team in the very last seconds. Samuel treasures those moments when he gets the ball, releases it from his hands, scores as the buzzer sounds and the crowd jumps to its feet, cheering for Samuel — a boy determined to make his dreams come true.

The Stark Family

Originally Published by the Maximus Janton Foundation

Laura & Jjajja

Originally Published by the Atlanta Journal-Consitution

Laura Haley watched Keifah’s large, dirty hands remove the bright crimson University of Alabama T-shirt from the Christmas package. The dry heat of Uganda pressed upon them, creating the antithesis of a winter wonderland as Keifah opened the first brand-new item she had received in years, maybe decades.

She squealed at the sight of her favorite color and immediately pulled the shirt over her head, “Bama” stretching across her chest. She smiled brightly for a few pictures, then removed the XXL T-shirt, folded it neatly and placed it back in the Christmas wrapping. She would not wear it again, Keifah told the translator to tell Laura. It was the most beautiful piece of clothing she’d ever seen. She wanted to save it for her burial.

2

Uganda bound
Five years ago, Laura Kelley spent most days driving her BMW down Hwy 31 in her hometown of Birmingham, Ala., to The Wynfrey Hotel where she worked as a corporate sales manager. The green-eyed, brunette 20-something had a quick smile and a hint of the South in her every word. Her outgoing, talkative nature gave her the ability to make a stranger feel like a confidante within minutes. She was confident and hard working, but always ready for a girls’ night out. She bought her first home when she was 22 and racked up a bit of credit card debt decorating it with finds from her favorite boutiques and antique shops. She loved her church, Church of the Highlands, and was surrounded by loving friends and family. Her life was good — great by most standards. But Laura felt like something was missing. She was just living for herself and nothing more.

Laura’s younger brother Lee knew she was searching for more purpose in her life. He also knew where she’d find it: Africa. After a lot of coaxing, he convinced her to join him on a mission trip to Kenya. She signed on, thinking it would be a good brother/sister adventure. She had no idea it would change her life forever.

Laura had seen photographs of impoverished areas before, but seeing it firsthand — and even worse, smelling it — overwhelmed her. While visiting Kibera in Nairobi, Kenya, one of Africa’s largest slums, she kept a thick layer of strawberry Chapstick on her lips to help mitigate the odors of trash and disease. She cried herself to sleep at night thinking of the people she met each day. She wondered why she was born in America with clean water, healthy food and shelter, while those she met in Kibera were born with nothing. A sense of responsibility started to build within her, a desire to bridge the gap between her world and theirs.

While in Kibera, Laura visited a small church. The women there appeared ecstatic to see an American woman walk through the door. They assumed she had come to share a profound message and immediately began making plans to gather a group together the next day to hear her speak. Laura panicked and stayed up all night, trying to prepare something to say to the women. She pieced together a generic lesson from the book of Ruth about loving one another and following God’s principles. When she spoke before the women the next day, they hung on every word. They responded as if she had given each of them bricks of gold.

“I couldn’t believe how powerful and impactful it was,” said Laura. “It made we wonder what kind of difference I could make if I was more prepared. I realized Africa didn’t need me, I needed Africa.”

Laura followed that mission trip to Africa with two more. Then she decided to take a leap.

In 2012, she quit her job, sold all her possessions, rented out her house and moved to Uganda on a two-year mission trip with Sozo Children, a Birmingham-based ministry that organizes short- and long-term missions to Uganda to care for neglected children and introduce them to Christianity.

3

Fortuitous meeting
One day Laura and Sozo director Daudi Sebaana visited Ngongolo, a secluded agricultural village about 40 minutes outside Kampala, the capital of Uganda. They were seeking people in need. Villagers suggested they visit the widowed, handicapped woman who lived at the bottom of a steep hill.

Inside a one-room mud hut they met Keifah. The 95-year-old woman had a head of white, close-cropped hair and large, weathered hands. She didn’t speak English, but she had an infectious smile unmarred by her missing front tooth. Paralyzed from the waist down, she moved around her hut and small garden by scooting on her bottom and hands, dragging lifeless, callused legs behind her.

Laura’s presence seemed to make Keifah nervous. She swept up her hut, rolled out a grass mat for Laura to sit on and insisted that Laura’s backpack not sit on the dirt. Daudi began conversing with Keifah in her native tongue, Lugandan, and translated for Laura, who got the impression Keifah wasn’t interested in what they had to say. But then Daudi asked Keifah if she knew any worship songs. Keifah’s expression lifted and she instantly began to clap and sing. Her voice was raspy and not completely in tune, but her joy was contagious.

Daudi and Laura explained to Keifah that they wanted to bring a Sozo team over to help tend to any needs she might have. Keifah seemed skeptical but open. Laura suspected she was more excited about their company than the services they offered.

From that day on, Laura and her interns began making frequent visits to Keifah’s hut to help her out. Neighborhood kids often stole her food, so the Sozo team installed a lock on her door. She had no sanitation system so they dug a latrine outside her back door.

Laura had noticed the large, thick calluses worn into Keifah’s feet from being dragged over the dirt floor. One afternoon she arrived at Keifah’s door with a bucket of water, sweet-scented body wash, a nail file and nail polish. Curious and excited, Keifah watched as Laura placed each of the woman’s feet into the water. The touch of Laura’s hands sent Keifah into a fit of giggles as her feet were scrubbed and her nails cleaned. She squirmed and kicked until they were both soaking wet and doubled over with belly laughs. Her nails were so thick and gnarled they couldn’t be cut, and they were sensitive to the touch. So Laura settled on just polishing each of her big toes a bold red. Keifah clapped and sang in celebration when Laura was done.

Keifah’s hut was along the path to one of the village’s watering holes. When she was alone, she’d sit on her porch and ask passersby to fetch her water in exchange for bananas or avocados she grew in her garden.

Two big yellow plastic water jugs would last her a week and not a drop would be wasted, she rationed it so meticulously. When Laura visited, she always brought Keifah a bottle of water, which Ugandans called “muzungu water” — white people water. She’d finish it off immediately. Sometimes Laura brought Keifah potato chips and peanut butter and jelly sandwiches. Not one to throw anything away, Keifah would save the empty water bottles and plastic bags for reuse.

Keifah’s favorite treat was Blue Diamond sea salt almonds. Her face would light up when she ate them. She once took a handful of the almonds, dug a hole in the dirt and buried them, hoping to grow her own sea salt almond tree.

“She was so joyful, yet she had nothing,” said Laura. “Our American mind set of happiness depends so much on what we have. This woman didn’t have material possessions and she didn’t have her health — she could barely move. But she was joyful. Whatever she had, I wanted a double dose of.”

4

Doing life
After 16 months in Uganda, Laura moved back to Alabama to work at Sozo’s headquarters, where she coordinated the summer internship program and fundraising efforts. But she still returned to Uganda often and began visiting Keifah on her own a couple times a week during her stays.

With Laura’s driver serving as translator, the two women spent their time together going about Keifah’s daily routine, mostly cooking and gardening.

“I would just do life with her,” said Laura.

One day Keifah told the translator she was Laura’s “jjajja,” which means grandmother in Luganda. Laura smiled and nodded in agreement. From that point on, that was what Laura called her.

Keifah loved to sing. One time Laura showed up at her door unannounced and she found the older woman singing, stark naked, while taking a bucket bath. Keifah wasn’t embarrassed, but Laura was. After that Laura would call out for her friend on the drive down the hill to her hut.

“Jjajja! Jjajja!” she’d yell, alerting the woman to her arrival.

Keifah would always respond with a song, loud and cheerful as it echoed up the hill. She would be clapping and cackling by the time Laura reached her.

“Seeing her joy and hearing it through song was so infectious,” said Laura. “Talk about someone who has hope in something that is not on this earth.”

Over time, through village hearsay and bits of translated conversation with Keifah, Laura pieced together some of the details of her adopted jjajja’s life.

Keifah was the mother of eight children, all of whom were deceased, mostly from complications related to AIDS. It is unknown whether all of the children were biologically hers. In Uganda, it is not unusual for people to refer to others as their mom or Jjajja, whether they’re blood-related or not.

Keifah was imprisoned for two decades, accused of feeding rebel forces during the Uganda civil war. She was crippled while she was in captivity; the nature of her injury and how it was incurred is not known. After her release, she ended up in the one-room mud hut in Ngongolo, not her native village, where she was shunned because of her paralysis.

“Everyone loves the little kids, that’s the bulk of what we do with Sozo,” said Laura, “but I love the women. They work from sun up to sun down to provide for their families. A lot of the time the men are MIA or they have two to three wives. The women are the rocks. Then there was Jjajja, all alone after all she’d been through. I was drawn to her.”

And Keifah was clearly drawn to Laura. Every time Laura paid her a visit, the older woman would choke up, place her hands over her eyes and bellow out a song before scooting around to her front step where Laura would join her. There they’d sit, shoulder-to-shoulder for hours, sharing life and often a comfortable silence.

5

Growing a family
Marriage was not on Laura’s radar.

“When I joined Sozo as a missionary, I assumed that meant I was laying down my dream of ever being married or being a mom,” said Laura. “I was OK with that if it was God’s plan, but then he brought Jason back into my life.”

A U.S. Army Ranger deployed in Afghanistan, Jason Haley was a high school friend of Laura’s, but they hadn’t spoken since graduation. One day he commented on a photo Laura posted on Facebook of herself with a Sozo child. His comment spurred an ongoing conversation and the two were engaged seven months later.

Keifah cheered when she learned of the engagement. Laura shared pictures of Jason with her and she loved them so much that Laura often let her keep them.

When Laura showed Keifah the wedding pictures, she screamed, waved her oversized hands in the air and marveled over every detail.

“She cared so much and was so invested in my life,” said Laura. “It’s like she really was my grandma.”

Laura was in Uganda for two weeks during that visit, and she spent many days with Keifah. But every time they said goodbye, Keifah would grow sad.

“She’d always shut down and get quiet when I told her I had to go. It was very obvious she was upset I had to leave.”

Laura told Keifah that Jason would come visit next time. The elderly woman hadn’t been feeling well, but she vowed to stay alive until she could meet him.

“I was so paranoid every time I left Uganda,” said Laura. “I was always so scared that would be the last time I’d see her.”

Laura learned she was pregnant in March of this year. She and Jason shared the news with family over Easter weekend. They planned to travel to Uganda this summer and couldn’t wait to tell Keifah about the baby, a boy. Laura ordered a red T-shirt with “Baby Haley Jjajja” stitched on the front. She planned to give the shirt and a copy of the ultrasound photo to Keifah.

But when Laura told her doctor of her travel plans, he advised her against it because of the Zika virus. She was disappointed but planned to send the shirt and photo to Keifah with a friend who was headed there soon.

Two weeks later, Laura received word from a Sozo co-worker that Keifah had died.

No one knew the cause of death, but she had been in the clinic for two days prior. The village had pulled together and given her a modest burial. Instead of her cherished Bama T-shirt, she was buried in a yellow Gomez, a traditional Ugandan dress.

Laura couldn’t bring herself to pick up the new shirt she’d ordered for her jjajja.

“I know she would have just loved it,” said Laura. “We couldn’t wait to take the baby to Uganda to meet his jjajja. I know she would have loved holding him. I’m just praying she somehow knows all of this. And though I know she’s in a better place, selfishly, we’re going to miss having that experience with her. She was my family, my jjajja. She was my village. The only thing that helps is that I know exactly where she is. I know she’s where she’s wanted to be and for her to finally be at the feet of Jesus is the sweetest thing I can imagine.”

6

New perspective
After living in Uganda, Laura has found adjusting to life back in the U.S. a challenge.

“The hardest part is learning how to balance it all. My selfish desires want to spend money, buy more and more and build ‘my kingdom,’” she said, gesturing air quotes. “It’s truly a daily struggle to choose a life counter to what America tells us is success.

“I think about Jjajja saving our empty water bottles. She’d set them outside to collect rain water. Because of that, now my eyes are opened wider to how wasteful we are. Like when people brush their teeth and leave the water running. I can’t stand that. We take so much for granted, but I think of Jjajja every day and I remember to be grateful for everything.”

In 2014, Laura and Jason moved to a historic house in Columbus. They chose a diverse neighborhood with people of varied races and socio-economic statuses. Laura’s favorite thing to do is sit on her front porch and talk to neighbors who walk by, some of whom are homeless. Last Thanksgiving, she and Jason took pecans from the tree in their yard and made pies for all their neighbors.

“I used to go volunteer on designated days,” said Laura. “Now it’s just my lifestyle, a full immersion where I look for opportunities to serve, day in and day out. I have more of an awareness of people who have fallen to the wayside, and I have a deep desire to engage with them.”

Her experiences in Africa have affected old friendships because she doesn’t like to spend her time and money in ways she did before. She doesn’t own a credit card. Instead of shopping or going away for a weekend to the beach, she prefers to save her money for a trip to Uganda or to sponsor a Sozo child.

“Jjajja taught me the importance of investing in other people,” said Laura. “I’m not talking about monetarily, I mean the importance of quality time. Human interaction is such a gift. Really listening to someone and not having to talk about yourself, or not talking at all — just enjoying each other’s presence. You could say (Keifah and I) had no relationship on some level, as there’s so much we didn’t do. But I can’t say I’ve spent that much quality time with anyone else in my life. We’re so distracted these days. We’re on the phone, we’re multi-tasking. With Jjajja it was full eye contact and we were focused on one another, even when we weren’t verbally communicating. We were fully in the moment and there was nothing superficial about it. It just goes to show you, love doesn’t need translation. Love transcends translation.”

Laura and Jason plan to travel to Uganda with the baby as soon as they’re able. She promised her jjajja she’d return with Jason, and she intends to keep her word. Still, it’s difficult for Laura to think about a Uganda without Keifah. She plans to visit the woman’s grave site in hopes that she’ll find some closure, but she can’t imagine driving down the hill toward Keifah’s mud hut and not hearing her ebullient song. Even so, Laura may roll down the window anyway and call out for her beloved Ugandan grandmother, “Jjajja! Jjajja!”

About this story:

It was Jjajja’s face that grabbed my attention. I loved her smile.
An old college friend, Laura Haley, posted pictures of the Ugandan woman on Facebook for years. I began to feel like I knew her. I was heartbroken this spring when Laura posted about Jjajja’s passing. I reached out to her and asked to learn more about Jjajja and their friendship. I’m so grateful she was willing to share. Laura was amazing to interview. I could ask just one question and she’d answer with colorful anecdotes, layered with detail that played out like a movie in my head. I admired Laura and Jjajja’s friendship from afar for so long, it was an honor to get an insider’s look at their connection. By telling their story, I feel I now have a small role in their journey and for that I am grateful.
It's funny how timely this story feels in our current climate. Laura and Jjajja were from opposite worlds – different languages, abilities, skin colors, financial worth – but they loved each other anyway. I draw hope from their friendship, a poignant reminder of how beautiful humanity can be.

Maximus the Great

Originally Published in the Atlanta Journal-Constitution

When I read that my son might have an aversion to kisses, I pressed my lips to his over and over. When a parent in my support group said her child hated the feeling of wind on his face, I pushed my son on the park swing as high as I could. I had let go of many “normal” expectations for my son, but the notion that he might not delight in something like a breezy day or a kiss from his mommy seemed cruel. There was so little I could control, but these simple pleasures I would fight for with everything I had.

2

Maximus is born
Dan said everything was going to be OK, and I believed him.

He had just returned from our son’s side in the Neonatal Intensive Care Unit (NICU) at Northside Forsyth Hospital in Cumming. I was in recovery, eagerly waiting to hold my baby, basking in euphoria over the arrival of our firstborn.

We learned we were expecting just six weeks after our wedding. Dan and I were both ecstatic and immediately posted the ultrasound picture on our refrigerator, right next to the photo of us from the night we met. It was taken seven years earlier on my 21st birthday. My sorority sisters from Auburn University had taken me to a bar to celebrate the milestone, and Dan was the bartender. I gave him my number and we dated off and on for a few years until I realized I couldn’t live without him.

In the winter of 2010 he took me back to the same bar where we met and proposed. We married 10 months later and built our new life in a two-story home in Sugar Hill.
When it came to decorating our nursery, we didn’t want to know the gender of our baby ahead of time, so I had options in both pink and blue ready to go.

When I return to that moment in the hospital recovery room, daydreaming about my newborn son, I am overwhelmed with gratitude for Dan. He knew Max was in trouble, but he did not want to rob me of my moment of bliss. He knew that time would come soon enough.

Minutes after Dan gave me his most reassuring nod, a nurse came to talk to me. I expected to hear that my son was doing great and I would hold him soon. Instead, she threw my entire world off its axis. She said my newborn baby was struggling. She used the word tachypneic and explained that meant his breathing was excessively rapid. She said I would check out of the hospital long before he would. I looked at Dan in disbelief and found him glaring at the nurse.

When Dan left to return to our son, I began to hyperventilate. Heavy sobs and a guttural cry unlike any sound I’ve ever made shook my body. The only words I could muster were, “I want my baby.” The recovery nurse could do nothing to calm me. She left my side briefly and I heard her make a call.

“Please let me bring her,” she said. “She is very upset and she needs to see her baby.”

Minutes later, still lying in my recovery bed, nurses pushed me down a long, cold hallway and into an elevator. I was wheeled into the NICU room headfirst, surrounded by a sea of light blue scrubs. Nurses shuffled about busily and I heard a steady beeping noise. Two nurses parted like curtains to reveal Dan, his upper body stretched over an incubator, sobbing. Inside the incubator was our baby boy, his chest rising and falling violently.

“Mrs. Janton, I’m Dr. Miller.”

I heard him a couple times before I had the wherewithal to turn my head. He was looking down at me, his face surrounded by a halo of white light. I watched his mouth move, but all I heard were the murmurs of the nurses, the rhythmic sound of machines and my husband weeping. The doctor repeated himself a few times as I shook my head, unable to grasp reality.

“We don’t know what’s wrong yet,” he said. “He could have pneumonia, we see some features that may indicate a genetic disorder — we really don’t know, but we are very concerned.”

I don’t think I said a word when the doctor finished. I just nodded in shock. It wasn’t until I was being wheeled away that I began to scream. I felt hands holding mine and stroking my forehead, but I don’t remember faces. I was crying too hard to see. Nothing was as it was supposed to be, nothing made sense and there was nothing I could do about it.

3

The diagnosis
On day three in the hospital, the geneticist knocked on my door. Dan and I were in good spirits, completely smitten over our son. We planned to name him simply Max, but Dan began calling him Maximus in the NICU, and we loved the strength of it. The name means “the greatest,” a perfect fit for our little guy.

He was still tethered to multiple machines showing little, if any, improvement, but we made ourselves believe he was just having a rough start. We looked past the tubes, the unique features of his body and the bewildered glances from the medical staff. Our baby boy was perfect and beautiful in our eyes. He was going to be OK, and we did our best to concentrate on that hope.

The geneticist shook her head at our optimism, and we stared at her blankly as she explained our son might have something called Costello syndrome, a diagnosis that only 300 to 400 people have worldwide. Her expression was cheerful as she described the gastrointestinal issues that may plague him throughout his life. Bright lipstick highlighted her wide smile as she told us about the cardiac issues and the increased risk of cancer. Her oddly enthusiastic bedside manner made her news impossible to comprehend.

“He may always have a funny look about him,” she said of my child, the baby I had dreamed of meeting since I was a little girl.

Dan’s face, permanently tan from the golf course, was now white and his uncharacteristic silence scared me.

The doctor offered to show us a website with more information, but we declined. She left us some notes about the condition, and we promptly tucked them away where no visitors could see them. We did not want speculation or questions from others.

Blood was drawn to test for three genetic syndromes, and we did not allow ourselves to entertain any of them. We were told the test results could take months to receive. We spent that time being optimistic and prayerful. We brought Max home when he was 6 weeks old, along with a nasogastric feeding tube, a cardiac monitor, a feeding pump and a variety pack of syringes, none of which had I read about in my bedside copy of “What to Expect When You’re Expecting.”

Max could not eat by mouth. We made every effort with both breastfeeding and bottle-feeding during his NICU stay, but it never clicked. We continued to try to feed him by mouth at home, but he received his food and medicine through a tube in his nose. An IV pole, equipped with a feeding pump, stood cold and sterile next to Max’s soft, white bassinet in our bedroom. We were eager to put him in his baby blue nursery with the white crib and cozy beadboard ceiling, but his overnight care required we keep him nearby.

Plagued with severe gastric reflux, Max could not handle much volume, so his round-the-clock feedings went at a snail’s pace, sometimes as slow as one ounce per hour. I pumped breast milk every three hours and Dan and I took turns cleaning Max’s pump bag just as often. Max vomited often, sometimes 20 times a day, which resulted in ER trips and hospitalizations a few times. Before leaving the house with him, we learned to pack a half dozen blankets in lieu of a burp cloth and mastered grace under fire while others watched in horror. Dan and I have cleaned up more vomit than a janitor in a fraternity house.

Max was 3 months old when we got the news. It was Oct. 17, our wedding anniversary. The geneticist’s office called to say the results were in, but they couldn’t be released over the phone and they couldn’t see us in the office that day. I knew Max’s pediatrician would have a copy of the results, so I called his office and scheduled a sick visit for that afternoon.

I had given in over the previous weeks and researched the syndrome online. I saw pictures of children with Costello syndrome and recognized features — the curled ears, thick eyebrows and deep creases in the palms of his hands and bottoms of his feet. I read about feeding struggles that mirrored Max’s and prayed it was just a coincidence. Despite all my efforts to stay optimistic, I saw proof. I never admitted it to Dan, afraid if I said it out loud it might be true.

“Are you sure you want to hear the results without your husband here,” Dr. Vigil asked as I sat before him, clutching Max on my lap. I had tried to call Dan before the appointment, but he was at work and I couldn’t reach him. It was already the afternoon and I knew the doctor’s office would probably close before Dan was off for the day. I couldn’t risk that chance.

“We’ve waited long enough,” I said. “I need to know now.”
“The test came back positive, Mrs. Janton. Max has Costello syndrome. I am so sorry.”

No website, no instinct, no geneticist could have prepared me. In one fell swoop, every ounce of hope I had mustered over the past three months was taken. Everything I had envisioned for my child, for my family, disappeared. I wept silently as fear spread through my body like a disease. I tightened my hold on Max, afraid if I let go I would lose him forever — a feeling I haven’t shaken to this day.

I waited until Dan came home from work that evening to tell him. He was sitting on the couch, nuzzling Max when I sat in front of him and placed my hand on his knee. I don’t remember exactly what I said or how I said it, but I remember Dan didn’t say a word. He held Max against his chest and closed his eyes for what felt like an eternity.

Later that evening I decided to go ahead and give Dan his anniversary gift. It was a custom-made sign I had designed and ordered when I was just three months pregnant. I walked out of our bedroom and, without saying a word, held it up for him to see: a weathered piece of wood, painted with a lyric from our wedding song, a fortuitous message: You and me together, we can do anything.

4

Our new normal
Costello syndrome is caused by a gene mutation, characterized by gastrointestinal problems, delayed physical and mental abilities and a weakened immune system. People with this condition have relatively short stature and may have reduced growth hormone levels. Heart conditions are prevalent, as are unusually flexible joints, weakened muscle tone, tight Achilles tendons and vision problems. In most cases, babies with Costello syndrome are born large, then their growth slows drastically.

When Max was about five months old, I noticed something peculiar about his eyes. They danced about constantly, and we were referred to an ophthalmologist who diagnosed him with Opsoclonus Myoclonus. It’s a neurological disorder that causes the eyes to make erratic movements and is often associated with Neuroblastoma, one of two cancers that are prevalent in people who have Costello syndrome.

It was Christmastime and in between Max’s first trip to Santa and decorating the tree with “Baby’s First Christmas” ornaments, we spent the month taking him from scan to scan. His oncologist was convinced Max had Neuroblastoma, and we lived in a daze until he was proved wrong. We were so relieved, but our fear didn’t go away. We have learned it never leaves, it only hibernates.

I joined an online support group when Max was six months old. Because Costello syndrome is so rare, I depend on the advice of fellow parents just as much, if not more, than that of our medical team. The worldwide support group communicates mostly through emails, and I quickly learned that staying informed is a double-edged sword.

So many stories have made me smile, and I’ve received advice that’s helped immensely, from choosing Max’s feeding tube brand to trying new medications for various issues. But some emails have left me devastated. Stories of cancer diagnoses, risky surgeries and long recoveries, stories about rude comments from strangers and, worst of all, stories of loss.

Recently I woke to read that a 16-year-old with Costello syndrome died from a heart attack, completely out of the blue. I instantly dropped my phone, clung to Dan and wept over a boy I never met.

Max is now 4 years old. He wears braces on his feet, he eats through a gastrostomy tube in his stomach and he is a teeny little guy. He learned to walk soon after he turned 3, and he recently learned to climb the stairs in our house. Multiple times a day, he plops in our laps with a stack full of books, and he loves to chatter about his day in filibuster fashion.

A beautiful, outgoing boy with brown curls and a smile full of shiny white teeth, Max is the mayor of everywhere we go. You can ask anyone from Kroger to the post office and they’ll confirm that he is known as the boy who says “hello.” He loves to greet people and he loves to wave at cars as they pass by. He is often the loudest kid in our music class, singing his “bum bum bums” with the beloved Miss Mary, and clapping for his friends when it’s their turn. We have music playing in our home all the time. Max, like his daddy, is a big fan of Mumford & Sons (or “band,” as he calls them) and their songs always lead to dance parties in the living room.

Among a slew of other specialists, Max sees an oncologist three times a year to be screened for tumors. Cancerous and noncancerous tumors are not uncommon with Costello syndrome, so a regimen of scans, bloodwork and urinalysis are recommended, especially in younger patients. He also sees a cardiologist two to three times a year. Those appointments are blunt interruptions to the happy-go-lucky days we strive to lead. We sit with doctors behind closed doors and have discussions that no parent wants to endure.

Max has hypertrophic cardiomyopathy, which is a thickening of the cardiac muscle. It is the disease best known for claiming the lives of young athletes. Max’s condition has worsened in the past year, but he is not symptomatic. We have been told that it can strike without warning. He is susceptible to having a cardiac episode any time, a possibility that paralyzes me with fear and makes me dread the rare occasions when I’m away from him.

After Max was born, I returned to work at my marketing job for a while. One of Max’s nurses from the NICU became our nanny and caretaker three days a week. It was a perfect arrangement until she had to resign. We researched all our options from private nurses to special needs day cares and were overwhelmed by the costs. We realized the most practical choice was for me to quit my job and stay home with Max. It was a tough decision, since I was the insurance carrier and Dan had just started his own sales business, but it made the most sense.

The benefit is I’m now able to take Max to more therapy sessions every week. We are constantly working to improve his feeding ability, his speech, his motor skills and physical capabilities. He generally meets his goals at a slow pace, but the anticipation only makes the celebration greater. Everything from when he puts his hands out to break a fall to tasting ice cream without gagging is celebrated in our house. Dan and I are both quick to get glassy-eyed when Max says “I love you” or when he applauds himself for shooting the ball in his toddler-sized basketball goal. His enthusiasm is infectious, constantly leaving us to shake our heads, wondering how we got so lucky.

Max started a pre-K program this year. Sending him to school was an incredibly difficult decision because of health concerns, but we never doubted how happy it would make him. When I drop him off with his teacher twice a week, he throws up a hand as he says “bye, mama,” and he walks to his classroom, hollering “hello” to everyone along the way. What I would give for such confidence.

5

Life full of magic
This year, Max became a big brother. He showers Baby Duke with hugs and kisses, holds his hand (or his hair) and makes him laugh. And he brings him diapers when he cries. “Baby” is the first word out of his mouth every morning.

Every day I pray for strength to be the mother Max deserves. Loving him is the easy part, keeping my worries at bay is the struggle. Thoughts about health concerns, insurance issues and the future can be all-consuming, preying on my mind in the quiet of the night. I pray he won’t feel left behind when Duke surpasses him in size and ability. I worry about his feelings getting hurt by a stare or a comment. I concentrate on ways to instill confidence. Dan and I work on his manners, holding him to the same standards as we would any other child. We want him to be polite and respectful, and we want to teach him to ignore rude people. I, personally, am still working on the latter.

I have been able to temper much of my anxiety through faith. Ironically, Max’s diagnosis is what made me question God the most and also what drew me closest to him. Motherhood is my sanctuary. It’s the godliest service I’ve ever known, and the connection I feel to my children is nothing short of divine.

After Max was born, I did not get to hold him in the NICU until he was 12 hours old. It was 2 a.m. Dan wheeled me into Max’s room and the nurse said I could only hold him for a few minutes. His breathing was still erratic and he needed as much rest as possible, she said. She draped the wires over my shoulder and placed him in my arms. I cried happy tears, grateful to be reunited with the little life I’d carried for nine months. The nurse watched the monitor, then looked back at me.

“His heart rate is slowing,” she said. “He knows he’s in his mama’s arms.”

That’s right, I thought. He is where he belongs. I knew I would make life better for him. I was determined.

I could not have fathomed, however, all the ways he would make life better for me. The baby boy who was deemed “failure to thrive” is a flourishing toddler, filling our days with hope, perspective and magic.

Nearly every night, weather permitting, Dan and I take the boys for a walk in our neighborhood. We know it’s time to go when Max comes to us saying “stroll,” nodding persuasively. The baby usually dozes on his half of the side-by-side stroller, while Max, on his side, chatters about everything in creation.

Dan and I use this time to share our days with each other, all the highs, all the lows. And we often talk about the future. We dream up vacations, we talk about career goals, and we contemplate all the ways we can make life amazing for our boys. Sometimes our discussions collide with our fears, but Dan says everything is going to be OK and I believe him.

“Go” is one of Max’s favorite words. In addition to his nightly stroll, he loves to toddle around a putting green with his daddy, and he delights in every errand we run during the day. In the car he smiles and claps when I roll his window down and he squeals “more” when the wind hits his face.

Every night I squeeze Max tight as I pace his bedroom floor and pray aloud. He clasps his hands while I bow my head to give thanks for his precious life and to ask God to heal his heart and keep him safe. And every night, after I say “amen,” Max echoes with a “naynen” and kisses me right on the lips.