Unreasonable Hope: Finding Faith in the God Who Brings Purpose to Your Pain

FOREWORD

I AM CONVINCED THAT THE HOPE THAT GROWS IN TIMES OF trial is the most beautiful hope.

Georgia taught me that.

Georgia is Chad and Julia’s young daughter. She has a rare brain disorder called lissencephaly. I remember when Chad and Julia, who have been friends of mine for years, first heard the diagnosis. I was out of town with my family. We already knew there was some kind of complication, but we didn’t know how serious it was or what it would mean for the Veach family.

Chad called to give me the doctor’s report, and I’ll never forget the strain in his voice. The knot in his throat. The tears I could hear even over the phone. But more than that, I will never forget Chad’s faithfulness and unwavering belief that God is good—all the time, in every way, no matter what. From the very beginning, Chad chose hope and trust when self-pity and bitterness would have been the easier road.

We cried together that day. But we also understood that GiGi is a gift from God. A miracle. Perfectly planned and formed by a God who knows no limitations.

The doctors said GiGi would never be responsive. They said she would never turn her head, open her eyes, or smile at the parents who loved her unconditionally. We were told to stop believing and to stop hoping.

But that’s not Chad. He can’t stop hoping. Faith and joy and hope are hardwired into him. Anyone who has spent thirty seconds with him could tell you that.

Chad’s personality is fun, electric, and ridiculously loud. In the best possible way, of course. But it is his faith that leaves the greatest impact. His unswerving hope literally changes you. I know, because it has changed me. I’ve watched and learned as Chad and Julia have faced fear without faltering. Their capacity to hope despite impossible odds is as astounding as it is inspiring. They never stop believing, never stop praying, never stop hoping.

What Chad and Julia have gone through is unique, of course. But we can all relate to struggles. Maybe for you and me, the struggles we face are different: broken relationships, tragedies, failures. The point isn’t to compare pain, but to learn how to hope in the face of pain.

And that is what Chad and Julia do better than anyone I know.

The other day Chad sent me a video of GiGi. I couldn’t keep the tears from my eyes as I watched her clearly, unmistakably responding to what her dad was saying. She made eye contact. She smiled. She radiated joy.

These are the miracles that follow hope. To see GiGi is to realize how precious life is—and how essential hope is.

Unreasonable Hope reminds us to look to Jesus and respond to his love and grace in life’s worst moments. Chad’s stories, passion, and wisdom will inspire you—even in the most unreasonable circumstances—to hope again.

JUDAH SMITH

Part 1

THE STRUGGLE

It Happened One Night

What does every parent want more than anything? More than success for their child or a long list of accolades, what thought most consumes a mom and a dad? True, almost all parents have some crazy vision of their kids as the next Michael Jordan or Steve Jobs. Without meaning to, we occasionally imagine our child’s name in shining lights on a marquee or in a newspaper’s headline. But there’s another desire that’s even more present. Something all parents want more than an overachieving star child. It’s a desire that can haunt you at strange hours of the night, wake you from a deep sleep, and pop into your head when you least expect it.

Safety.

We want our kids to achieve great things, to live the dream and have it all. But more than this, we want them to be safe from harm. From the moment we strap their little bodies into oversized car seats, we’re worried. Suddenly the freeway becomes a death trap, everyone is a crazy driver, and our vehicles won’t move at speeds above thirty-five miles an hour. This is all because we are responsible for the little lives strapped in the back of our cars. No one is going to mess with our babies.

My wife, Julia, and I are no exception to the rule. In fact, if the range of caution is measured on a scale from Hippy-Let-Your-Child-Be-Free Parents to Paranoid-Never-Let-Your-Child-Be-More-Than-Three-Feet-Away Parents, Julia and I might be a little too close to becoming full-time residents at a mental institution.

Our paranoia was perhaps strongest when it came to our first child and most definitely evident when it came to the baby monitor. A baby monitor is a lovely device that allows you to hear your child sleeping. If your child happens to stir in the night, you will hear it and come flying to her aid. It’s a beautiful miracle of technology!

It’s also the most annoying thing on the planet.

We knew Julia would be going back to work only a few months after our daughter, Georgia, was born, so we wanted to train her to sleep away from us. We were determined not to have a co-sleeper and to get her used to the idea of her parents being in the room next door. We were going to be strong! Doesn’t quite sound like the paranoid parents I was describing, does it?

Well, in our attempt to be strong, we found ourselves the exact opposite. Every night, we’d lay the baby monitor between our heads with the volume set to ear-shattering, full blast.

If Georgia cried, we wanted to hear it. We also heard if a feather dropped in the room or a mouse sneezed. Every night, we were lulled to sleep by the loudest, most irritating static. And if we were lucky, we’d pick up a frequency from some car driving down the street nearby or the neighbor’s satellite television.

It was anything but peaceful. One night while this static blasted in my ear, sounding like someone crunching a thousand candy wrappers at once, I snapped. Something came over me. I realized how the Incredible Hulk must feel, and the baby monitor became the victim of my anger. That miracle of technology went flying through the room, right out the door, and into the hallway, smashing into the wall with a crack!

Enough! I yelled, returning to my sleeping position with a newfound admiration for silence.

It was only five minutes later, however, that I became filled with regret. As Julia and I settled back into sleep, our paranoia, the reason we had the monitor blasting in the first place, returned. I found myself reluctantly walking back into the hall to grab the monitor, pop the batteries back in, and return to the bed, tucking the monitor next to my head, volume at its previous ear-shattering level.

If our perfect little girl needed me, I would be ready.

During those first couple of months, this is how we viewed our Georgia. She was perfect in every way. So perfect that it seemed all of our baby monitor craziness wasn’t really needed. We rarely heard her cry through the monitor’s static. In fact, she rarely cried at all. At the time, we didn’t realize that was not a good thing. But I’ll get into that later.

For now, you only need to know that we soon discovered our little girl was not safe from harm. But it wasn’t crazy drivers or broken baby monitors that threatened to take our daughter from us. It was something much uglier.

It was lissencephaly.

Don’t worry. We’d never heard of it either. That is, until April 10, 2012, a little over four months after Georgia was born. Soon I will delve into this terrible day, how it affected our family, and the details of what lissencephaly means. For now, though, you just need to know that it has to do with our daughter’s brain and her inability to function normally. It also comes with many terrible side effects.

One of the worst of these is the tendency toward seizures and spasms.

Infantile spasms are awful to watch. Imagine an electric shock wave traveling through the body in short bursts. The baby will have this wave and then return to consciousness for a moment before having another. The waves may appear again and again in a terrible pattern. But for the most part, they are not life threatening.

Seizures, by comparison, are much worse. A seizure can occur at any age. They are violent and ugly. While having a seizure, a person or child will shake all over uncontrollably. Her eyes will roll into the back of their heads, and the whole ordeal can drag on for minutes or come in clusters. This means that the first seizure of the day will most likely not be the last.

Months after we received Georgia’s diagnosis, this is what we faced on a daily basis.

If we were paranoid before all this went down, there is no word to describe what we were next. Our days in the months following April 10 were filled with constant worry. There wasn’t a baby monitor loud enough to give us peace of mind once we discovered what exactly our daughter was up against.

I always like to joke that my wife has job security. Without her, I have no idea what I’m doing. In times of crisis, my MO is to stand with wide, blank eyes and ask her, What should we do?

I ask this question because Julia is brilliant. She’s quick to answer and problem-solve, she’s smart with money, she plans every vacation and major life event, and basically, I can’t live without her. I know it sounds very mushy and romantic, but it’s also a practical reality. I need Julia Veach.

Even before Georgia was born, I often asked Julia, What should we do? Because I’m a pastor, I’m constantly traveling to speak at different churches, and I always end up leaving something in the hotel room. Among the many things accidentally abandoned at Hiltons across the globe are watches, sweaters, cologne, and two brand-new suit jackets. If it’s an inanimate object, I’ve left it.

Usually what occurs is a sudden onset of memory when I finally get home. Yes, it seems that it’s always upon arrival that I realize an item has been left behind. This is when I turn to Julia. This is where she shines. In five minutes she’s called the hotel lobby and arranged the shipping, and because of her superpowers, the lost item arrives on our doorstep the following morning.

Because I am utterly helpless when losing even something trivial like my cologne, I had no idea what to do when Georgia started having infantile spasms and, soon after, full-on seizures. I stood there like a deer in the headlights as Julia talked to the doctors on the phone.

What do we do now? The question ran through my mind. This isn’t supposed to happen. This can’t be happening. How do we stop the seizures? How do we take away this disorder? How do we prevent all this?

The reality was that the doctors had put a life sentence on my daughter. They told us that children with the disorder have a life expectancy of about ten years. Many die much earlier than that. It seemed that no matter what we tried, the clock was ticking.

This meant every time a seizure occurred, we were holding our breaths as if plunging into the ocean. Could this be the moment? Is this the day you’re going to take her from us, God?

Our first-time-parent guilt was now joined by new-caretaker guilt. We found ourselves constantly haunted by the question of whether we were caring for Georgia in the right way, whether there was something we should be trying or doing differently.

And this haunting feeling only worsened when Georgia’s seizures began at the end of May 2012.

The summer came next, as summers tend to do after spring. Seasons are predictable that way. With it came City Blast, a giant event put on by our church to celebrate the Fourth of July with the community. As I was on staff at the church, Julia and I had large roles to play in this event. There was a basketball tournament run by yours truly (I’m kind of a wannabe LeBron). There was also a large 10K race in which we had both committed to participate. The event was huge in the city. People would come from all over for a perfect summer day.

Georgia, however, didn’t know about this, and she, along with her disorder, had other plans for the week.

On July 2, Julia and I lay sleeping in our bed. Well, I was sleeping. I had somehow drifted off into a hard snooze even with the baby monitor blaring. I was out cold. Julia, on the other hand, lay awake, listening intently as she always tended to do.

Her hands grasped the comforter as her ears worked at 115 percent. She waited to hear a change in Georgia’s breath that signified something was wrong. When a seizure hit, neither screaming nor crying blasted through the monitor. No, when a seizure hit, all that could be heard amid the static was a slight change in the pace of our girl’s breath—a small inconsistency. We would hear a pause, followed by short, deep bursts of breath.

I’m sure it wouldn’t be very noticeable to most ears. It definitely wouldn’t wake you up from a deep sleep. Often I would sleep through it. Lauren, a friend who lived with us and helped out with Georgia, would sleep through it as well. But sleep wasn’t in the cards for Julia that night. She lay awake with a deep sense of worry and anxiety.

Is Georgia okay? she wondered.

Is she breathing right now? Will tonight be the night? If tonight is the night, will it have been my fault? Will I have questions? Will I blame myself? How will Chad take it?

When I look back on our story and our journey so far with Georgia’s condition, this night, July 2, 2012, stands out very clearly in my mind as a moment when something beyond just Julia and me, someone bigger than our little family’s struggles, intervened.

Chad!

I woke to my name and someone shaking my body. I started to drift back to sleep, the darkness closing in, when . . .

Chad! Julia yelled again. She was adamant that we needed to talk.

Instantly, my mind went to Georgia. What? Do we need to go to the doctor? Is Georgia okay? I began to wake up. I searched around the room for my glasses so I could see what was going on.

No. It’s not that. I need to have a conversation with you, Julia said. Her tone was serious.

A conversation? I thought. Most conversations can usually wait for the morning, after coffee. This better be good.

But what came next was unexpected.

I need to know that if Georgia were to die tonight, you wouldn’t blame me.

What? Julia, I—

I need to know, she interrupted. I need to know that if God were to take her while we slept, if she were to have a seizure or choke or stop breathing, that you would feel that we both tried everything we could to help her. I need to know that you wouldn’t blame me and that you wouldn’t blame yourself.

It completely threw me off. First of all, why would Julia ever assume that I would blame her for something as terrible as that? In that moment, I realized how much guilt she was carrying over the whole situation. And then I thought about myself.

How often had I experienced the same sort of worry? How often had I, too, lay awake wondering if Georgia would live to see the next morning, worrying if there was something I could’ve done differently? We were both carrying the guilt for something we didn’t do.

Of course I wouldn’t, I answered sincerely.

And it was the truth. Somehow, in that moment, God had stirred this question inside of Julia, which had caused her to wake me up. He wanted us both to give Georgia’s situation to him. He wanted us to admit what was out of our control, to give the entire thing to him and let him take over.

We weren’t going to blame ourselves anymore.

Julia and I both slept much more peacefully that night. She’s told me before that it was the first solid night of sleep she’d had since Georgia was born. The whole situation was rather strange. Why had God chosen to wake us up at this moment? Why had we suddenly realized that we needed to give Georgia to him? Was her death really approaching that quickly? Was he preparing us for something even more tragic?

The following night, we discovered the answers to these questions.

July 3, 2012, was by far our worst night—definitely Georgia’s worst night of seizures. But something was different inside Julia and me. When we heard the first strange breaths coming through the monitor, we didn’t panic. Rather than feeling a sense of doom and gloom, we found ourselves calm. Our thoughts were rational as we ran to Georgia’s room.

The seizures seemed to be coming more frequently than they had on other nights, so we decided to time them to see exactly how serious the situation was. We prayed for her as she shook all over.

Her body convulsed. Her eyes rolled to the back of her head.

And then it stopped, and Georgia’s body became almost as stiff as a board. Her eyes suddenly snapped back into place. She began to blink and look around.

She made a small noise of pain. She did this sometimes, but often there was nothing, no sound coming from her despite having gone through a trauma.

How long was that one? I asked Julia, who was eyeing the timer