SURVIVOR: At 6 days old, Emma was put on a ventilator (which she remained on for six months) and had her first cardiac catheterization, or heart cath. She was diagnosed with pulmonary atresia with intact ventricular septum (PA-IVS), which affects approximately seven to eight out of 100,000 births. She was also diagnosed with Turner Syndrome, a genetic condition affecting only girls due to a missing X chromosome. Only 1% of fetuses live to term with this genetic condition. Only two other people in medical journal history have had this combination of disorders, with Emma being the only known survivor. Brian Chilson

When I arrive at the Wasson’s house on a torrentially rainy December night, the photo session has just ended, and mom Jerilyn is settling her daughter, Emma, into her room. Momentarily transfixed by the beautiful, almost ethereal sound of her singing to her child, I’m surprised when my eyes prick with tears. When Jerilyn emerges to retrieve an iPad for Emma, she radiates warmth and ease. The house is cozy, decorated for the holidays; we head to the open family room where we talk. Dogs circle our legs and Emma’s caregiver, Jennifer Scarlett, busies herself in the kitchen. 

I learn that Emma, now age 10, has defied the odds since before birth. Though Jerilyn’s doctor suspected something was wrong, it wasn’t until shortly after she was born that they knew with certainty. Though she appeared to be a healthy newborn, two hours later while in the nursery getting a bath, she turned blue. After the on-call pediatrician discovered that Emma’s oxygen levels were low and she had a heart murmur, she was rushed to Arkansas Children’s Hospital. Only six hours after giving birth, Jerilyn and her husband, Kenny, joined her there.

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Learning about Emma’s diagnoses and how to care for her was, Jerilyn says, “like traveling to a different country, learning a different language. It’s on-the-spot learning, plus you’re dealing with life and death.”

At 6 days old, Emma was put on a ventilator (which she remained on for six months) and had her first cardiac catheterization, or heart cath. She was diagnosed with pulmonary atresia with intact ventricular septum (PA-IVS), which affects approximately seven to eight out of 100,000 births. She was also diagnosed with Turner Syndrome, a genetic condition affecting only girls due to a missing X chromosome. Only 1% of fetuses live to term with this genetic condition. Only two other people in medical journal history have had this combination of disorders, with Emma being the only known survivor.

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As an infant, Emma endured multiple procedures to try to fix her heart. During one, they discovered a rare heart condition that led to her first open-heart surgery when she was just 2 months old. It was the first surgery of its kind, and she had a 50% chance of survival.

As a result of these many invasive procedures, Emma developed potentially fatal lymphatic issues that led to further complications and surgeries, including abdominal surgery on her 3-month birthday. Emma continued to defy the odds by surviving that operation.

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Brian Chilson
AT PLAY: Emma and her mom, Jerilyn.

At 7 months, she went through yet another abdominal surgery that would enable her to be fed through a feeding tube for the first time. Today she continues to be fed through a GI tube into the intestines.

At 8 months, Emma was finally able to come home from ACH for the first time. Over the intervening years, she has had multiple catheter procedures on her heart and many hospital stays due to illness and fluid overload.

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There have been many times Jerilyn and Kenny have reached the point of having to discuss palliative care and plan for Emma’s funeral. They have also had to think about what her future will look like. “She will never be cured,” Jerilyn said. “We have to plan for Emma being with us for the rest of her life, which means having tough conversations and asking questions like, ‘How long are we going to live?’ You have to think of these things long before typical parents have to.”

Through all of this hardship, Kenny and Jerilyn have found victories to celebrate, both big and small, like when Emma breathed for the first time since birth without oxygen right before her first birthday. Or when she had her second open-heart surgery at a year old and only had to stay in the hospital for six weeks (unlike the longer stay after the first one). Or how she’s learned to communicate with words and signs and also through a communication device. “Once you get to know her, it’s easy to understand her,” Jerilyn said.

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This Christmas marked another big milestone when Emma was able to enjoy decorating the tree for the first time. “That was huge for us. It took 10 years to get here, but we got here. She’s our Christmas Day miracle,” Jerilyn said. Emma was also able to walk, without the aid of a walker or wheelchair, to see Santa. The Wassons have learned not to take anything for granted. 

Every day is a challenge for Emma and her parents, but one they meet with strength, determination, acceptance and deep love. On Emma’s CaringBridge site, they write, “She is a fighter, and we are blessed to have her in our lives … Emma’s care is complex, but she is worth it!”

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Jerilyn has worked tirelessly to support her daughter and others caring for special needs kids — exhaustively researching Emma’s unique condition, finding a professor with specialized knowledge to communicate with the doctors, connecting with parents online and in person, facilitating support groups, speaking publicly and making videos for caregivers. Her background in counseling and psychology and her work with developmentally delayed children pre-motherhood help with her outreach, but Jerilyn jokes, “I had good training before Emma, but nothing like what she’s put me through!” She adds, “Emma’s a gift to us. I don’t think I would have been a great mom of a typical child. She has taught me how to be an even better mom.”

I’m astounded and moved by her fortitude, wisdom and optimism and say so. “I learned from her!” she says. “You have to fight, to be resilient, to keep pushing when you think you can’t. We’ve definitely had our moments of feeling like we just can’t do this anymore, but then you do. For her, you do it.”

That’s not to say that it’s not a struggle at times, and Jerilyn is very clear on that point. There’s no room for stoicism or toxic positivity on this journey; she stresses the importance of self-care and emotional honesty. She’s candid when talking about the challenges that come with parenting kids with special needs, and shares that she and her husband have sought help from mental health professionals both individually and as a couple. She notes that the divorce rate for parents of special needs kids is higher than average, around 60-75%. 

Jerilyn also wants to normalize the range of feelings caregivers might experience. “I know there are moms dealing with guilt about normal feelings, like I wish my child could date, drive, get married … I try to remind them to be kind to themselves. That’s something I’ve had to learn, too. There are waves; acknowledge them. Don’t try to hide it or push it down or tell yourself to get over it. Just ride it out and then — always, always — something will happen that’s fantastic, like Emma decorating the tree or walking to Santa. You don’t want to miss these things. Keep your eye on the next miracle.”

Brian Chilson

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She learned the importance of taking care of her physical health after developing arthritis in her 30s and carpal tunnel in both wrists, which required surgery. She had a moment of clarity when she realized the toll caregiving was taking on her body. 

“It’s a marathon, not a sprint, so if you experience burnout or start to see your own health decline, you realize you can’t be there for your child. I know that I am the best person to take care of Emma, so if I’m going to be there for the long haul, I need to take care of myself.”

Also crucial for parents, according to Jerilyn, is acknowledging chronic grief or sorrow. “It’s unlike the five stages of grief and then you move on. This is ongoing, but I tell parents to remember that it comes in waves; you’ll go back to acceptance again. For a long time, I’d say to myself, ‘C’mon, you gotta get over this, it’s been two years … it’s been three years … eight years. I kept putting a time limit on myself to heal.”

Then she had another realization. “This isn’t something to heal from, it’s something to grow from. Now I’m grateful because I’m so much better of a person. I’m so thankful. People ask, ‘Would you change things?’ Well, yeah, I’d change things for her, but for me and my personal journey, I think it’s been the best thing for me. Blow up my world and let me learn something.” Let’s just pause to take that in — the strength it takes to live with such a brave heart, or as writer and therapist Tara Brach says, “Live with a heart that is ready for anything.”  

It also takes courage to ask for help, and Jerilyn learned to do this early on. She praises the social workers, nurses and doctors at ACH, the friends who brought meals, and the online community that she found and helps foster. And, of course, the organizations and caregivers who’ve offered their services.

Emma first went to Pediatrics Plus, which the Wassons loved, but had to move on when she reached elementary school age. They tried public school for a short time, but the school could not meet her needs. Easter Seals was the only place willing to give her a chance, with the stipulation that she have her own aide, provided by the family. Another victory? Two months in, Easter Seals said Emma no longer needed an aide. “I attribute that to the teachers, aides and therapists; everyone at Easter Seals who was willing to learn about how to do a feeding pump,” Jerilyn said. When she went to train the staff, she found a roomful of willing participants.

Emma now attends the Academy at Riverdale (part of Easter Seals), where she’s making great strides. It’s the only place of its kind in this region. 

Jerilyn and Kenny have had success finding nonmedical caregivers for Emma through care.com. Jerilyn makes sure prospective caregivers know that though it’s a tough job, it’s also a rewarding one if you have “the heart and willingness.” Many of Emma’s caregivers have been inspired to go on to careers in nursing, audiology and occupational therapy, a testament to how many lives she’s touched. “It’s been so neat to watch people learn what their gifts are through her.” She adds, with a laugh, “but it’s hard to lose them!”

She and Kenny interviewed 200 people during their search for a new caregiver and recruited Jennifer from Texas. She explains to all prospective hires that they’re not just coming for Emma, they’re coming into a family with all that entails — dogs, for one. The fact that Jennifer’s Dachshund mix sits serenely curled in my lap at that very moment with the Wasson family dogs beside us leads me to believe that this current setup is working well.

Jerilyn feels that part of her work is to address and dispel some misconceptions about caring for a special needs child. Though it’s hard to believe, some people have asked her questions like:

“Why do you need help if you stay home all day?” and “What do you do all day?” She said, “It’s very misunderstood what it takes to care for a child like this.” 

She also discovered there’s a stigma around the caregiving profession, noting that some people who’ve worked for them faced pushback from their own families. “It’s not valued as a profession,” Jerilyn said. 

And then there is the financial piece of caring for a disabled child, compounded by a lack of readily accessible resources. Add to that a shortage of caregivers, health care costs and reams upon reams of red tape, and it can feel hopeless.

“The system works against you. It’s very frustrating for families,” Jerilyn said. “You have to fight for every single thing, and there’s so much paperwork. Kenny and I say all the time, ‘How do families with both parents working do it? Because this is a full-time job.”

The Wassons have only now gotten accepted for a waiver program that’s designed to keep kids out of institutions and in their homes, after 10 years on the waiting list. 

Another subject Jerilyn is passionate about is the importance of representation for kids with disabilities. “Everyone needs representation and a sense of belonging. People need to be seen. Emma needs role models; she and others need to see people in wheelchairs or using a walker. We’ve got to embrace all of these adaptations.” And represented she is! Next time you’re on I-630, take a look at ACH, and you’ll see her.

“The only way we’re going to connect is if we’re authentic and honest and put ourselves out there,” Jerilyn said. That’s why they started the Totally Emma Facebook page, which people visit from all over the world as far away as Australia, and her CaringBridge site — to share their family’s journey with others.

For Jerilyn, caring for Emma isn’t a duty or obligation — it is her path, her calling. She reflects, “Not every day, but for the most part, when you get that 1,000-foot view and you’re looking at the whole tapestry, absolutely it’s the best thing that’s happened to me.”  

 

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