Surviving the Unimaginable…

Gabe and Mandy McCauley

Surviving the Unimaginable…

Words by Wendy Cunningham

“It was apparent to everyone else that we should be dating,” Mandy McCauley says of her husband Gabe. Gabe, who was from West Virginia, met Mandy at a small, private Bible college in her home state of Florida. It wasn’t immediately obvious to her, but their mutual friends were right: Mandy and Gabe were a perfect fit. Mandy aspired to be a singer/songwriter, and Gabe aspired to be with Mandy. The couple relocated to the Nashville area after college, where Mandy pursued her dream, and Gabe started a film production company.

After nearly a decade together, Mandy was in the process of putting out her first album when the couple was surprised to learn they were expecting a child. Because of her career choice, Mandy had resigned herself to start a family later in life—if at all—and felt this was coming at a bad time. “I was finally getting my shot.” But she believed God was redirecting her towards something much bigger and more important.

The McCauleys could not have imagined the life change God had in store for them.

“There were some indicators before Scout was born that something was amiss,” Gabe shares. The ultrasound revealed some abnormalities. “They could see that she had bilateral clubfoot, so that set off a series of protocols,” Mandy adds. “We didn’t really know what to expect or what that would mean. But I prayed a lot.” There was nothing the couple could do other than wait and see.

When Scout was born, she struggled to breathe and was immediately whisked away by the doctors. In addition to the clubfoot, the new parents were told their baby had a cleft palate, which was likely the cause of her breathing issues. But by day three, a cardiologist had discovered an abnormality in Scout’s heart and she was transferred to Vanderbilt University Medical Center. That was the beginning.

Scout was born with a rare and relatively newly discovered connective tissue disorder called Loeys-Dietz syndrome. Although she was diagnosed early, which both parents say was a huge blessing, there were not a lot of answers to their growing list of questions. “We had very humble doctors,” Mandy recalls. They just didn’t know much because the condition was still so uncommon. They did know the life expectancy wasn’t great—an average of 27 years—but there was a lot of hope in research at the time. The McCauleys held onto that hope because what else could they do?

At one month, Scout had her first heart surgery to repair holes. Her connective tissue would grow faster than other heart tissue, and so, at two years old, she underwent surgery to replace her aorta. She also struggled to eat well due to the cleft palate. She wore braces on her legs as they developed abnormally. Scout and her parents endured countless procedures and therapies as they navigated life with a child with special needs.

“Having Scout was the catalyst to a more genuine faith,” Gabe confesses. “Having to deal with real life and real fear and hard questions—Why would God allow these types of things? Doubt is not the opposite of faith. It’s just the other side of the coin.” Gabe describes his faith journey as, “More erratic now. There is genuine joy and freedom, but also the depths and shadows are deeper.”

Mandy also experienced a transformation in her faith walk as she stepped into her new challenging role of mom. “I always had a constant conversation going with God. I had faith that He knew better than me, and He was going to take care of us. From the moment the doctor said, ‘Push,’ we learned what was really important. Once that baby [was born], I realized, ‘If I love this baby like this… God has to love me nine-thousand times more than I love this baby.” Mandy’s faith grew by leaps and bounds in those early months. Not only was she scared for and deeply in love with this new child, but she was also discovering new levels of love with her Heavenly Father.

“The Bible is not a law book. It’s a love story,” she adds. Becoming a mother was like an awakening for Mandy. “Having Scout made me fall more in love with God. How can you love someone if you don’t have feelings for them? Before Scout, I didn’t have ‘feelings’ for God.” Mandy’s faith went from being a noun—something that just existed as part of her life—to an experience. Scout ushered in an encounter.

Adding Scout to their family taught the McCauleys the beauty and importance of church community. Both Mandy and Gabe were brought up in a church that left the couple navigating some complexities in their faith walk. “Neither of us wanted Scout to ever wonder if she was going to heaven,” Mandy says. Growing up, Gabe and Mandy struggled to fully grasp and appropriately apply concepts like forgiveness, shame, guilt, and sin. There were shifts the McCauleys hoped to apply to the faith traditions they desired to pass onto their children. Having Scout brought about some of those shifts.

“I got to witness a Christian community support and encourage us in ways that I had not experienced before,” Gabe says. “Having people who have special needs in society give the rest of us an opportunity to exercise community.” Despite the immense challenges having a child with Scout’s condition brings, the couple thought of it as a privilege to receive love and see the world through this new lens. It was still difficult, but it was also a gift. It brought purpose to their circumstances. When the McCauleys found out their close friends Rory and Joey Feek were expecting a baby with Down syndrome, Mandy said, “Congratulations!”

Gabe says, “We knew they were in for some of the most profound experiences.”

When Scout was three years old, the couple welcomed another child—a boy. “[Ash was] in many ways what we needed,” Gabe says. He brought a different kind of joy and light to their family dynamic. As Scout and Ash grew, they became best friends. Because Scout’s condition is limited to her physicality, her mind is completely intact. Scout was thrilled to have a brother, a companion, and they loved each other deeply.

However, every child comes with a little added complication as well. The most difficult part about adding Ash to the mix was the complexity of having what is called an “unaffected child.” Scout’s condition demanded so much time and energy that it was hard for the couple to find the balance. There was a lot to contend with, and although there was a tremendous amount of joy in their growing family, there was also a lot of stress to navigate within themselves, their children, and their household.

Gabe and Mandy took a leap of faith and moved away from the Nashville area to Columbia, Tennessee. It was an act of faith because of how dependent they had become on hospitals and specialized medical care which was more readily available in Nashville. But the McCauleys desired a different way of life—a different pace. They needed a change. It was still difficult, but living on land away from the city offered a peace they had been longing for. And for a little while, their family fell into the rhythm of daily life.

Sadly, it was only for a little while.

One evening, Scout began complaining of pain. They took her to the hospital completely unaware that it would be her final trip. The next day, she was gone. On January 5^th, 2019, Scout was fully healed and completely restored as she entered into eternity.

Gabe and Mandy were left to face the un-
imaginable.

It’s not supposed to work this way. Parents aren’t supposed to outlive their children. It’s an unspoken agreement most of us believe we’ve entered into with God. And yet, the McCauleys’ story reminds us that it does happen. Bad things do happen to good people. Tragedy strikes when we least expect it. And grief is never something anyone can see coming or
prepare for.

Gabe borrows a phrase from a mentor when he says, “Progressive revelation. That’s where I’m at with all of this.” These things don’t always make sense. They’re hard to process. And although some days there is peace, it never really gets easier. But God is in it. He’s showing them one step of the way at a time. “I’ve come to be comfortable sitting in the doubt and the darkness. I don’t run from it.”

“Scout was born in 2009. She lived nine years, nine months, and nine days…” Gabe recalls with tears in his eyes. “We have this thing with nines. Ever since our college years. We see nines everywhere.” As he speaks, Gabe smiles and points across the coffee shop to a woman waiting in line. The back of her sweatshirt has a single number on it: nine. “One of my hopes is that we will redeem this someday. Maybe in nine years…”

What would redemption even look like? Purpose? Restoration? Peace?

Perhaps the McCauleys will know it when they
see it.

“Scout has certainly shaped who we are,” Gabe recounts. “First, special-needs parents and then parents who’ve lost a child.” He pauses. “It would seem real growth only happens through suffering. I hate it.”

Whether you’re a parent or not, it’s unimaginable to consider what this family has walked through. Not just in Scout’s passing, but in every step of the way until and since. Yet somehow, Mandy sums it up perfectly when she says, “This is the holy s**t.” (Yes, she used a curse word because sometimes that’s the only word that works.) Death is holy. Life is holy. They’re also equally crappy. “The holy ___ is the day-to-day stuff that you don’t love but you know you have to do, and it’s the right thing. It’s the hard things. The things you do entirely out of love.” These are the things Gabe and Mandy did day in and day out while Scout was with them. But it’s also the things they’ve been doing ever since.

It’s all a holy act. The act of living on this side of eternity.

Mandy adds, “This is the stuff of life—the holy ground of servitude and love that a lot of people choose to avoid.” Mandy and Gabe certainly didn’t choose any of this, but they recognize the sanctity of every moment they shared with Scout. There is a whole lot of life in every one of those nine years, nine months, and nine days.

“We’ve experienced the sacredness and the brevity of life,” Gabe summarizes.

There is remorse, but no regret.

When reflecting on what exists now in his life that wouldn’t have been there if he’d not loved and lost Scout, Gabe says, “It has created an innate draw to develop and create community in small, unique, quiet ways.” He smiles. “I imagine God has something to do with that.”

Two years before Scout’s passing, the couple’s friend Rory Feek lost his wife Joey to cancer. Several men just showed up on Gabe’s porch to sit with Rory in his grief. It was a gift. Much like that first week in the story of Job. “Porch Time,” as it came to be called, allowed for a space to talk about the real stuff—things that really matter. And the people we become because of those things.

Two years later, the same group showed up to sit with Gabe.

“The Porch is a sacred place for slowing down. I used to think going slow was a detriment, but now I see it as a blessing.”

Gabe now understands the importance of fostering and encouraging people to create this space for each other—not just in times of grief, but always. Because the transformative things of life are ongoing. But even though Gabe counts this space as a blessing, he struggles to articulate what “Porch Time” is. “When you try to define it, it starts to lose what it is. It’s not something. It’s nothing. That’s the point. Just sit and be. No expectations. No conversation starters. There is no pitch, you don’t have to talk at all actually. It’s just a time for contemplation and reflection. But it’s not approached flippantly either. It’s creating intentional community.”

Sometimes, in the busyness of life, we forget to slow down and connect. Grief has a way of making a way. “I don’t know if I would have been able to do that, or prioritize community, if I hadn’t gone through something really hard.”

Mandy sees the blessings and lessons of having loved and lost Scout a little differently. Instead of what it brought into their lives, Mandy recognizes who they have become—or rather avoided becoming—and how they see the world differently because of knowing their daughter. “Scout saved our lives. I think we might have been jerks if she wasn’t born. We could have been so much more selfish.”

“Scout taught us that every single moment is precious and holy. You really don’t know how much time you have,” Mandy continued. “She was a physical example of the precious gift of time and selflessness and joy in the midst of hard.”

For Mandy, Scout was the embodiment of a living sacrifice: “I gave birth to what Christ is.” In the same way Scout’s birth brought about a newfound love for God, Scout’s passing revealed a deeper understanding of why He sent Jesus. “There was nothing I wouldn’t give to make it all better. I would have sacrificed my own life for that child.”

The McCauleys get it. They’re standing in the hardest, darkest, yet most illuminating place to see God’s holiness.

Statistics vary, but some say the divorce rate of parents who have a child with special needs may be as high as 87%. Surprisingly, the statistics of divorce after parents lose a child are as low as 16%. No matter how you slice it, there is no question the McCauleys’ marriage has weathered a tremendous amount of stress. The odds, it would seem, are stacked against them. And yet, somehow, they are stronger than ever. Their love and respect for one another is tangible.

“Gabe is my best friend. I just knew that I wanted to marry someone I really liked. A partner, not a lord,” Mandy says. Part of their success lies in having picked the right person from the start. Although we never imagine we’ll have to walk through tragedy like this with our spouse, standard wedding vows do promise “for better or for worse.”

Gabe agrees that it does make a difference that their relationship was solid before any of this came to pass—they had been married for nine years before conceiving Scout. But he also concedes they are even closer now, on the other side.

“We are stronger or better—although I don’t like those words—because of the hard things. It’s the hard things that have allowed us to hold onto each other even tighter.” We’re reminded of the refiner’s fire and the purity that comes from going into the flames. “The idea of us not being a unit doesn’t even ever cross my mind.”

Mandy shares that it’s complicated to navigate grief together, even when two people love each other well. There is no way around the ugly, you have to walk right through it. She confesses that for a while, they were in survival mode, fight or flight, doing what had to be done to survive. Perhaps they’re still there some days. “If we’re not honest, we will fall apart.”

Gabe adds matter-of-factly, “We’ve been given the gift of bluntness and a lack of pleasantries.” There is no room for facades or pretenses when you’re surviving the unthinkable. It’s all real. All the time. Mandy and Gabe have had to learn to communicate like never before. They have to ask each other for what they need. And more than anything else, they have to be vulnerable. But being vulnerable in grief can sometimes feel like a bottomless pit.

Mandy says she’s learned to, “Be gentle. Read the room.” She adds that they’re in a constant conversation and always trying to stay on the same team. “It’s not beautiful. It’s messy.”

“One of the harder parts has been parenting Ash through this,” Gabe admits. “When kids deal with this type of grief, they have to deal with it at every stage of development as they grow.” He tells about the cyclical nature of this process as Ash gets older. Each new leap in his mental and emotional development is met with fresh understanding of what has happened and what’s been lost. It’s as if they lose Scout over and over again.

Mandy returns to the theme of “gentleness.” With Gabe. With Ash. With herself. “Gentleness has been the instruction from God on how to navigate this whole process.” Mandy is reminded of a phrase that’s not her own but has brought her a lot of peace through the journey. “The Holy Spirit is a gentleman.” She knows He’s not going to force something on her that she’s not ready for. He’s patient. He’s waiting. He’s kind. And He never leaves. Despite God’s goodness and ever-presence, Mandy admits she’s still in the thick of it.

“I’m mad at God. I want it to go away, but it hasn’t.”

Her honesty brings clarity and peace to those who grieve along with her. This is hard. Impossible, really. And it’s okay to not be okay. It’s also okay to take steps forward. Neither forfeit what’s important—neither hold much meaning. It’s all just part of the process. We’re allowed to hold deep sadness and immeasurable gratitude in the same memories. We can be broken and growing at the same time. It’s confusing. It’s terrible. And it’s wonderful.

What is most profound about the McCauleys’ story is that their life was not changed when Scout died. Yes, that was a terribly challenging part of their journey, but it’s not the catalyst for their transformation. The McCauleys’ lives were changed when Scout was born. It’s not her death that defines them, but her life. The mere fact that she was theirs, even for just a brief time, will forever outweigh the weeks and years they’ll spend apart.

After all, time is short. Those weeks and years will be over soon enough. For all of us.

Scout is a gift. And her story is a blessing. It reminds us every day that we have a choice to make. We can allow life to bury us. We can let grief and pain be our whole story. Or we can choose to be marked by living—right in the midst of the mess. We can choose to cling tighter to God and to each other.

That’s how we survive the unimaginable.