Joy Fowler: Surviving the loss of a child and becoming “just” Joy
Updated: Feb 1, 2021
As a podcaster for justice, I stand with my sisters from the Women of Color Podcasters Community. We are podcasters united to condemn the tragic murders of George Floyd and Breonna Taylor and many others at the hands of police. This is a continuation of the systemic racism pervasive in our country since its inception and we are committed to standing against racism in all its forms. Find out more at #podcastersforjustice.
Last week in my interview with Ash Prasad, author of How to Write Inclusively: An Analysis & How To Guide, we discussed the need to create safe workspaces. She asked, “Are we creating safe spaces? Are you allowing that if someone has a complaint, something will be done about it? Unsafe environments create continued trauma.” She shared that she’s never worked in a place where she felt like she truly belonged, and no manager has ever asked her how they can help her feel safe.
This week in my interview with Joy Fowler, diversity & inclusion program manager at the Port of Portland, we discussed similar themes. I met Joy over 20 years ago after we both gave birth to boys born at 24 weeks. We volunteered together on Legacy Emanuel’s NICU Family Advisory Board. After her beloved son, Amir, passed away in 2012, Joy and her husband Allen founded a foundation for special needs children in his honor, A MIRacle Foundation, Inc.
A native New Yorker, Joy moved to Portland, Oregon, and got married right after college. She had her oldest son, James, soon after that. When she got divorced from her first husband, her mom tried to lure her back to New York, but Joy stayed put in Portland. She had made great friends and connected with her sorority, the Zeta Sigma Omega Chapter of the Alpha Kappa Alpha Sorority,* where she found community.
Joy met the love of her life, Allen, in a group of Portland transplants. When James was seven years old, Joy got pregnant with her second child. After she started experiencing spotting around the fifth month, she was placed on permanent bedrest. By the time she reached 24 weeks gestation, she felt like something was not right. She called the doctor and was directed to go right to Legacy Emanuel Hospital.
Back when I first knew Joy, I edited the newsletter for the nonprofit we parents cofounded, Precious Beginnings: Parents Supporting Parents of Critically Ill Newborns. This is an article Joy wrote in the July 2000 issue:
“On September 14, 1998, I walked into Emanuel wondering why my doctor selected this hospital for possible delivery of my son who was 23 weeks, 6 days gestation. On September 18 I understood, when my son Amir Samuel was born at 24 weeks, 3 days, weighing 786 grams. Not only was I relieved that he was in one of the best NICUs in the country, but also I could see they were doing everything possible to keep him alive.
Amir was born with all the common ailments associated with being a premature infant: chronic lung disease, apnea, bradycardia, etc. I remember seeing him for the first time and wondering where my strength would come from to be a GOOD mom to such a tiny person? As the hours and days passed, Amir made it very clear to all of us that he was not going anywhere. I realized not only how brave he was, but also that I was drawing strength from watching him fight to exist in a world filled with beeping machines, doctor examinations, and general NICU noise.
One word to describe Amir during his NICU stay of 105 days was FEISTY! After being on a ventilator for a short time, he decided one day, when the tape needed changing, that he was not going to allow them to retape him. It was slightly comical to see two adults try to restrain a 1-½-pound baby who was determined to pull out every inch of tubing. Needless to say, Amir was extubated and placed on nasal canula hours later. We were also fortunate and thankful that Amir made it through the 105 days with minimal complications, no illnesses, and no surgeries.
I look at Amir now and feel blessed that he is still FEISTY! At 21 months he throws food happily, says “NO” a lot, and is on his own program - which everyone in the house seems to follow quite well. He is definitely A MIRacle!”
Unfortunately, things turned out differently than Joy and Allen expected. At a year and a half, beautiful Amir had his first seizure. The doctors thought it might have been a febrile seizure. Then six months later, the same thing happened. When the next seizure lasted for six hours, they realized something wasn’t right. Amir was put on seizure medication, and their lives filled with constant medication and monitoring. As Amir grew, he wasn’t able to control his trunk (chest area). Further testing and exams indicated he needed occupational, physical, and speech therapy along with assistance with the typical preemie eating disorders.
Joy asked herself, “Who said I was the one who was ready for this?”
She and Allen found they had different strengths in caring for Amir. Joy needed to work to be able to dedicate herself to him when she came home, while Allen wanted to be home as much as possible. The seizures kept coming, and Amir wasn’t learning how to walk or talk as well as he should. They also had a whole host of other challenges to deal with, but Joy says they wouldn’t change a thing if they were asked to do it all over again. Fully wheelchair bound by the time he was in kindergarten, Amir attended an amazing elementary school with a principal who lobbied to have a wheelchair ramp built just for him.
Joy and Allen realized their time with Amir would be short. Before Amir passed away, they learned he had a rare, uncurable, and degenerative disorder that didn’t have any name to it. At some point, Joy hopes to do some advocacy work around this disorder, helping to bring more attention to it.
Joy marvels that Amir did so many things during his 13 years...for example, he had two girlfriends.
“It’s really quite amazing to see that in that short of lifespan, a. how many lives he affected, and b. that he was able to live a full life...he was a true blessing to us. We couldn’t have asked for a better, more determined, more driven little person than him.”
Amir enjoyed being bossy and telling stories about his older brother. As parents, Joy said, you assume that your special needs kid would not do anything wrong...but they finally saw what was happening. Amir teased and taunted his older brother just like he was a “normal” little brother.
At some point, the neurologist recommended they transition Amir to palliative care. They realized they wouldn’t have him around much longer.
Joy focused on celebrating Amir while he was alive. Allen was the one who took him to the doctor and IEP appointments. She feels that balance shows the beauty of their union, and it made it easier for her because Joy could focus on quality time with Amir.
“That was my way of coping because I knew his time with us was going to be short.”
Caring for a special needs child is expensive, and Joy and Allen were actually advised to get divorced so they could access more benefits.
“It doesn’t matter who you are...it doesn’t matter whether you are rich or poor...it doesn’t matter what your race is...it is very difficult and expensive to raise a special needs child.”
When they finally got financial assistance from the state of Oregon, they weren’t sure how they could afford to pay the bills before. That’s partially what prompted them to start the foundation, to help other families who were struggling.
“When I saw him start to deteriorate, I knew there was something I was supposed to do that was bigger...but I never really knew what that was. And the day that he passed away, it hit me. I just knew I had to help other children. I had to help other parents, other caregivers, and other facilities that were taking the time to care for special needs children. I just knew that was what we were supposed to do.”
They chose to honor Amir’s memory by starting a foundation in his honor, A MIRacle Foundation, Inc., and Joy says it’s been one of the most healing experiences she has ever had. They support families with medically fragile children, now serving 2,500 children through Portland Public Schools, the Beaverton School District, Oregon Health Sciences University, Legacy Emanuel Randall Children’s Hospital, and Providence hospitals. They aim to help improve the quality of life of these children, families, and caregivers with donations of home hospital beds, adaptive seating, wheelchairs, walkers, CD players, and school supplies.
“It really does make me happy, and I think he would be proud to see this is what we do and how we are serving not only children like him, but also developing a sense of community while we do it.”
Joy and I reflected on the way we met, serving on the NICU Family Advisory Board and dreaming up the ideal NICU, where families would have private rooms to take care of their babies. Our dream became a reality when Randall Children’s Hospital opened. Now families are able to room in with their children, unlike the wide-open-plan NICU where our babies stayed.
“It’s always been an amazing place, whether it was part of the old hospital or the new hospital. I love that they allow the parents to be involved and engaged in the care of the child, and they actually want to hear what you have to say...that is why Randall Children’s Hospital has been so near and dear to my heart.”
We switched gears to talk about the recent deaths of Black people at the hands of police. (Our interview was recorded in late August, when thousands of protesters were still on the streets of Portland every night.)
“I was a little bit jaded,” said Joy. “I thought our country was in a different place.” She said she looks for different ways to engage, whether it’s supporting minority-owned businesses or small businesses in general, making sure people know the importance of voting, or trying to find her voice in the madness of what’s going on. She is feeling the effects both personally and professionally.
Joy has to be mindful every day that some people are coming to work traumatized based on what’s happening, while others are trying to learn and find their space. She knows it’s a balance between how you support yourself personally and also do it at work.
After the deaths of George Floyd, Breonna Taylor, and others at the hands of police, she was glad that the Port of Portland police asked to start having conversations. Working with the Alliance of Black Employees, they started having “conscious conversations” every week. They’ve had 100 to 200 people regularly participate in deep conversations about what’s going on.
“I use a lot of what I need to fuel what happens at the port. I know for me personally, I have to look out for my own health and well-being and be mindful I have to take care of myself.”
The last time I spoke to Joy, she was working as the VP of diversity & inclusion for a bank. Working for one company for so many years, Joy realized, you don’t really know what’s on the other side. She decided to leave banking after spending 34 years in finance and enter into the aviation world.
She feels incredibly lucky to have landed in a place that feels like home. She’s never been able to say that about a workplace before. Now she feels a complete freedom in her new job at the Port of Portland.
“It’s actually been one of the most liberating, eye-opening experiences, which I didn’t even realize was possible.”
She gets to be her authentic self every day, and that’s amazing. She feels supported in every aspect of her work, and that has improved her health because this kind of work is hard.
“The work is emotionally draining, demanding, especially as a woman of color. You live it every day.”
The recent events have been extra hard on Black people, so Joy is glad she’s in a place where she feels supported.
We talked about what it was like when she first started in banking. The sexism took her aback to the point where she couldn’t believe it was happening. She found herself keeping quiet, letting sexist and racist comments pass because of concerns about how she would be perceived and how it would affect her career. She’d make excuses for the racism, thinking, “they didn’t really mean it like that.”
People would make comments about her hair or her features, or say things like, “Oh Joy, you really present well as a Black woman.” She overlooked a lot to be able to get ahead, but she didn’t realize she was doing it.
She also acknowledges her struggles with imposter syndrome, letting some opportunities pass her by.
“When you have those individuals in your corner who are going to stretch you, take those stretch opportunities.”
“I was so concerned with doing the right thing and making sure I stayed in the perfect little box that people thought I should be in. I assimilated so much that I almost wound up acculturating. And when you acculturate, you lose a sense of who you are.”
About seven or eight years ago, Joy said she had a mini-meltdown. After working hard to assimilate for so long in Oregon, she lost a sense of who she was.
When I asked her what advice she had for her 21-year-old self, she said,
“Be bold enough to make decisions even though other people might think those decisions are not good for you.”
For example, she always wanted to be an 11th grade English teacher, but her mom told her she needed to go into business so she could make more money. She wishes she’d followed her heart to become a teacher. Now she’s found ways to be creative in educating others in her work.
I asked her what she’d read recently that inspired her. She mentioned the eye-opening Waking Up White, and Finding Myself in the Story of Race by Debby Irving, which she read because she wanted to understand how white people thought about the world. She consistently watches the documentary “Thirteenth” and “I Am Not Your Negro,” because they help her educate people who don’t understand diversity, equity, and inclusion. She also regularly watches “United Shades of America” with W. Kamau Bell.
They talk a lot at Port of Portland about hope, but Joy wonders how long do we have to have hope? It gets to be daunting at times, living in this time of uncertainty. Joy’s son James is 30, and she has three grandchildren who are already talking about race at ages 10, 6, and 4. She wishes she could spare them from having to think about these things.
Joy struggled to adapt when she arrived in Oregon because New York was so much more diverse. It’s hard to be a Black or brown person here. Once here, you learn how to navigate and adjust.
“I don’t know if I’ve adapted in a good way or a bad way, but I’ve adapted. I can do Northwest nice...I lost my accent because I was told that was not going to work...because I came when I was so young, I was willing to do things I probably wouldn’t be willing to do if I came here today.”
When she first started working in finance in Portland, someone took her aside and said, “do you really want to know what it takes to be successful here?” She adapted and adapting helped her be successful, but she lost a little bit of who she was in the process.