Holding Hands With Grace: Grabbing On to the Adventure of a Lifetime

By Marcus Jones

Life is difficult. We’ve all been enlisted into the fray of life’s challenges and none of us get to tear up the draft card. And the pain that comes by way of that conscription touches us all. It’s as though there’s a grab bag of pain and everybody has to take a turn. No one gets a pass. There are no mulligans, no do-overs.

But what do I do with the problem of that pain? Where do I go? How do I seek out answers to the big questions? And can any good come from life’s hardest times? This is the story of faith, of family and of special need. It’s a father’s wrestling match with the pain of his daughter’s medical diagnosis and the powerful purpose contained in that tiny, enormous, extraordinary life.

This is our story–together. What it means to hold hands with something traumatic and transformative at the same time. What it means to grab on to the adventure of a lifetime. What it means to begin Holding Hands With Grace.

• Language: English
• Publisher: BookBaby
• Release date: May 19, 2015
• ISBN: 9781631929175

Book preview

MJ

My family and I recently took a trip to Palm Springs, California. We were able to get a good deal on a timeshare and quickly learned why our vacation was considered off-season. The temperature was hot—really hot. It was north of 110 degrees hot. But we immersed ourselves in the pool, got a steady diet of air conditioning and had a great time.

But one afternoon, we decided we really wanted to beat the heat. We had heard from some friends about a cool excursion called the Palm Springs Aerial Tramway. It was said that this daytrip was a must.

We gathered up kids and headed to the Tram Base Station a few miles away. Elevation: 2000 feet. Temperature: 100 degrees.

As soon as we arrived at the bottom of the mountain, my wife began to renege. What had sounded like a great idea to her a few moments before, now melted into a malaise of nausea upon seeing the nearly vertical grade we were about to ascend. You see, this tram ride just so happens to be the world’s second steepest tramway.

Peer pressure’s got nothing on Kid Pressure, and my wife was feeling it. She wanted out, but they wanted her in. All four of our kids jumped and squealed in excitement as we neared the entrance. There was no going back.

She emboldened her faith by scrutinizing the cable display and counting the steel lines that would hold our lives by their threads.

As we lifted off from the base station, the excitement only grew. We seemed to soar above the valley floor, higher and higher. The views were incredible and the sheer rock face was more than a little intimidating. Up, up, up we climbed. As we elevated, we couldn’t help but notice the breathtaking views. And we began to notice something subtly wafting through the open windows: cooler air. The higher we went, the cooler the air got and the more magnificent the vista became.

When we arrived at the summit ten minutes later, it was as though the entire world had changed. What we had left at the bottom was sand, scrub brush and molten temperatures. The top greeted us with a forest of trees and trails and greenery we thought was impossible to find in the desert. Oh, and it was 35 degrees cooler too. Elevation: 8500 feet. Temperature: a refreshing 65 degrees.

We spent the entire afternoon exploring and investigating trails and rock formations, plants and animals. I’ll be honest, we spent a fair amount of time just throwing rocks too. But as we loaded up in the tram to make our descent to the base station, I considered my life.

This little ten-minute ride had reminded me that even when I find myself in the place of difficulty, the place of desolation—the desert places—I need to believe something. When life brings the heat and I’m standing in the furnace of my pain, I need to believe something. It’s here I need to recognize that heat and scrub brush are naturally occurring elements of the valley, especially the lowest ones. But if I’ll look up, I’ll see a place that looks very different—a beautiful place.

The higher hope rises, the more beautiful the perspective.

The second-steepest tram ride in the world reminded me of that in the boldest detail. But I learned it first from a little girl named Addison Grace.

March 2, 2004 was the day she arrived. I remember it as the zenith of my life’s joy and the nadir of its pain. This same powerful life brought with it both merriment and mourning, happiness and hardship. And all in very close succession.

Christ Jesus, the omnipotent, empyrean life accompanied me on that day too. He, the Morning Star and the Man of Sorrows, stepped into both my jubilation and my lamentation to reveal Himself to me in a new and powerful way.

I held hands with two people named Grace that day, and Marcus has never been the same.

Like that ride on the tramway, my life gets hot when I’m in the valley. Sound familiar? But the higher hope rises, the more beautiful my perspective becomes.

There is a vista, sometimes right above my head, where I can see farther. There is an outcrop, sometimes right above my head, where cooler winds have soothed the searing heat. There is a mountain that Hope built, and it’s always over head.

Christ, my Hope, stands on high places, calling my countenance upward. The higher I allow His great hope to rise in my life, the more refreshed, the more powerful, the more beautiful my perspective becomes.

Life is difficult. It can be enormously challenging and painful. Seasons of trial can arouse such deep dismay and disillusionment. When the summer solstice comes, all you can see is struggle. All you can hear are questions. Answers are few and far between.

God is not the Author of every difficulty in our life. Sometimes we sense the strain from choices we’ve made. Sometimes difficulty has come hunting us.

Whether we created it or not, God promises that He has a plan and a purpose for our lives, in spite of our circumstances.

As you begin reading this book, if you’re in a hard season right now, why not try asking yourself a few questions. What do you have to lose?

Perhaps what you’ve feared is hopeless and purposeless is just the opposite. Perhaps God is up to something.

ASK:

1. What if God is growing me through something I wouldn’t have chosen, but is planning a future that’s greater than my imagination?

2. What do I need to learn here today to take into my tomorrow?

3. What does this challenge make possible?

4. What if this isn’t the end, but God is actually moving me toward something good?

5. How might this build me for the future?

6. God, what are you trying to teach me?

The most common thing we say to God in hard times is, God, make it stop. Seems like a reasonable request at first glance. But what if calm water meant you’d never grow to the next level in your life? What if you actually need a stronger character in the next chapter than you have in this one?

Calm water looks good on a postcard, but it never makes you sturdier. We grow through difficult things. Maybe instead of our knee-jerk reaction being, God, make it stop! we could begin by asking, God, what are You trying to teach me?

As you read along, ask God those questions. You may just get an answer that strikes right at the core of who you are. You may just begin to see something different in your place of suffering.

If He has a good plan for your life—and He always does—you might just begin to experience an elevated perspective in the pain. And the higher hope rises, the more beautiful the perspective.

I never saw it coming. The hit came out of nowhere. No warning. No hints.

If you’ve ever played football, you know the feeling. I had been plowed by the biggest, ugliest guy on the field. You know, the Cretin with three teeth and no neck, dressed like a freight train? He was fire-hot mad and coming for me. In an instant I was looking out the ear-hole of my helmet.

Blind-sided.

I’ll never forget the feeling of walking out of our doctor’s office after our first sonogram. Everything was looking good. Jen, my wife, was excited. I was too, but a little scared. It was our first baby, after all. After scanning the screen for some evidence of twig or berries, they had found none. We were having a girl!

I come from a decently long line of boys. There were no hair scrunchies in my house growing up. Nobody did nails or ponytails. We were doing good to bathe. We were boys. We did boy stuff.

We threw dirt clods and played guns. We wrestled and tested each other’s mettle with feats of strength. As the oldest of three lads, I lead what in retrospect must have looked like something out of Lord of the Flies. And I had the conch. It was King of the Mountain and Master of the Universe. It was survival of the fittest and the best man always won.

There were no doilies, no dolls, no ribbons, no bows. We didn’t do soft and serene. We did loud and obnoxious most of the time. We didn’t sit around and share our feelings. We tackled each other and tried to talk as little as possible. It was ESPN and John Wayne movies and pencil fights.

I was raised in a house full of dudes. And to say I had no idea what to do with a little girl is putting it mildly.

But even though I was a baby-girl-novice, and I kept trying to swallow the heart that was in my throat, I was thrilled. She would be my first baby. And the thought of her captivated me from the very beginning.

I’m a Big Picture guy—a planner. It took me about thirty seconds to begin thinking of logistics: the gear we’d need to buy, the college savings account we’d need to open, the wedding I’d be paying for. I was going to need a second job.

The dreams began to roll in. I imagined myself the proud father, handing my beautiful sixteen-year-old the keys to a magnificent sports car, fully equipped with digital surround sound, anti-lock brakes and air-bags inside and out. I dreamed of how I’d sit on the porch, polishing my 12-gauge, as suitor after failed suitor ran terrified from my presence. I smiled as I forecast what it might be like to walk her down the aisle one day, toward the one guy I had sufficiently threatened and vetted to take care of my one precious jewel.

I counted the grandchildren. I planned the house I’d have built for her. I dreamed it all. And it was an elegant and stunning life indeed. It was perfect.

And so it was. My wife and I began to plan and put in place all that we would need for this perfect, new addition to our family. And her name would be Addison.

My wife had been dreaming of the name Addison since she was a little girl. I guess that’s what chicks do. They decide on the name of their babies before they decide on the name of their husband. Okay. I’m not sensitive.

I liked it right away. It was unique. It was pretty. And I loved the nickname: Addie.

What wasn’t clear to us right away was what her middle name might be. We kicked around some options. We thought about it a lot. I even prayed about it some. And the name we just kept coming back to, over and over, was Grace. Her name would be Addison Grace Jones.

The contractions started knocking on the door around 5:00 PM. By six, they were ringing the doorbell about every five minutes or so. And by seven, those suckers were pounding the door down. It was time to head for the hospital.

Am I the only guy who secretly lives for this moment? Come on, fellas. You know, the moment you’re driving your pregnant wife to the hospital, in labor, and now find yourself surrealistically free of all traffic laws? I mean, what cop gives a ticket to a woman in labor?

I drove to the ER like something out of The Dukes of Hazard. I dared the Fuzz to pull me over. I had an excuse this time. It was the ultimate get-out-of-jail-free card. It was the happiest ride of my life.

But wouldn’t you know it. My wife spoiled the fun, gently patting my hand and reminding me that our evening would have a happier ending if we weren’t killed on the way there. I slowed, but my heart raced.

The hospital was a blur of orderlies and nurses, gowns and masks, doctors and IV drips. It’s as though the entire facility was an orchestra, whirling together in a mighty symphony just for me. And the crescendo was building. This was our moment. The great song of my life was about to be sung.

Pain and pushing. Hollers and tears. Gallantry from my wife. Helplessness from me.

All I could do was stand there and try to choke my heart back into place. The orchestra played the accelerando. The moment was here.

And then she came. Addison Grace Jones made her long-awaited entrance to the world. I exulted in an instant.

This was the thrill of victory. This was the moment every father dreams of. This was the pinnacle.

And then the Cretin with three teeth and no neck barged into the room.

The music suddenly stopped. All the oxygen was sucked out of the room. There was something wrong with Addie.

In a twinkling, my wide-eyed outlook was reduced to the tunnel vision of a man looking out the earhole of his football helmet.

Doctors and nurses flew into action. Alarms and codes rang out across the maternity ward. My baby was rushed into the Neonatal Intensive Care Unit (NICU) and solemn conversations began to be exchanged between our previously buoyant medical team.

Tests were proposed. Scans were readied. And then the shotgun blast that rang out like a verdict over my life: We’re going to do some chromosomal testing.

I don’t think I’d ever made a sound like that before. It was guttural and ugly. It was the sound of horror mixed with despair. It’s inexpressible in human words. It’s the language of parents that have been blindsided by a devastating diagnosis. It’s the language of loss, the dialect of suffering. There’s no way to spell the sound. You just feel it. The whole hospital witnessed the detonation.

As Jen lay sobbing in her delivery bed, I was whisked into the NICU where my newborn daughter lay in a tiny incubator, gurgling and struggling to breathe. Nurses attempted to suction her airway and remove the mucus bubbling from her nose and mouth. They inserted a tiny tube in one nostril and to their horror watched as it returned through the other. It wasn’t working.

A flurry of scans followed. And within minutes came the results. Her insides weren’t connected properly. It was a diagnosis I’d never heard of: Tracheoesophageal Fistula (TEF). Her esophagus didn’t attach to her stomach. Her little windpipe had merged with her stomach that was now filling with air. She wouldn’t survive without surgery.

The doctor gave me the verdict and he might as well have punched me in the stomach.

I vomited right there on the spot.

I was instantly reduced to a heaving mess at the nearest trashcan. This new dad had gone from the highest of heights to the lowest of lows, as each passing test result obliterated perfect dreams. My knees buckled as that freight train sent me pile-driving into the hospital floor.

I remember my dad and my brother being with me in that moment. They leaned in and helped me up as I began to gather myself. I’ll never forget the words my dad whispered to me there on that floor.

Your baby needs you now. Your wife needs you. You’re the husband. You’re the dad. Now, get up!

That might strike you as somewhat harsh or unsympathetic. It wasn’t. It was a strident truth that cut straight through the noise of my self-pity. It was the exact appeal to action that I needed. It was my call of duty.

I staggered sheepishly over to the tiny incubator where little Addie was laying. I was welcomed past nurses and technicians to look her full in the face. Little, round eyes blinked up at me, beneath tape and air cannulas, her baby hands and feet wrapped in sensors and riddled with needles.

Addie’s right hand lay outstretched as our stares locked. I trembled and wept and stretched my hand toward hers, touching her tiny palm with my index finger. And there, as my feeble declaration of solidarity—new father to new daughter—I held hands with Grace for the first time.

Dad’s here, Addison Grace. Dad’s here.

I returned to the delivery room, where I’d left my wife, to bring news that Addie would be transferred to Children’s Hospital Orange County (CHOC) to undergo an intricate procedure to repair the defect.

More weeping. More horror. And at 8 o’clock in the morning, it was the darkest daylight I’ve ever stood in. Still looming, the results of the genetic tests, which wouldn’t be conclusive until Day Three. But in my heart, I knew something else was wrong.

"Not that, God! I would whisper under my breath. Anything, but that!"

Addison was loaded into an ambulance for the 30-minute drive to Children’s. Jen, still in postpartum recovery, had to stay behind.

God, what is happening? Where are You?

I hiked myself into the passenger seat. Lights and sirens accompanied this ride. It was the saddest and loneliest of my life. I never would have dreamed it would happen to me.

Blindsided.

The days that followed still send chills down my spine. I never knew that sadness could cause physical pain, not just emotional. The doctor asked me to wait in the cafeteria while they got her settled. I remember walking into the hospital buffet, slumping into a chair at the end of a table like a gut-shot squirrel. I couldn’t peel my face out of my hands. I couldn’t sit upright. I was sick to my stomach with nothing else to throw up.

Once Addie had been transferred into the NICU, I returned to her bedside and was greeted by a nurse named Karen. She had seen me earlier in the cafeteria. She was a Christian and later said she had whispered a prayer for me as she purchased her salad in line. Unbeknownst to her, Addie would be her patient. Jen and I would be her patients too.

We met with specialists and surgeons who outlined their strategy to repair what was broken in Addison. Tiny, little instruments would invade this tiny, little body.

More weeping. More horror. And an unending, uncontrollable prayer conversation began between God and me. I was compelled into the little chapel down the hall. I threw myself on my face and screamed at God. I sobbed and ranted and uttered prayers no human can understand. I was joined by others in my family, I think, although I was nearly oblivious to their presence. Jen’s grandpa joined me at one point, I know. He sat silently next to me. I was prostrate under the adjoining coffee table.

Why is God allowing this to happen to me, Grandpa, I asked. Where is He?

I heaved out my lament to God—over and over. At one point the room filled with people for a Catholic noon mass. I never moved from my foxhole in the last row. Thinking back, my Catholic onlookers must have been spectator to an eye-opening Pentecostal exposition. I didn’t care. I was in the fight of my life and I was begging God to take it from me.

Day Two was the surgery.

If you’ve ever sat in a hospital waiting room during a loved one’s surgery, you know the sensation of time slowing to a crawl. I remember pacing the halls at CHOC, looking out the window from the top floor onto the log-jammed Interstate 5 Freeway below, wondering how on earth the world could be continuing on. My world had imploded. There was no more normal.

More prayer in the dark. More pacing. Agony.

God, deliver my daughter through this precarious surgery. Guard her life. And, knowing the chromosomal results would be in the next day, I’m asking you to stay your hand and be merciful to me. Health and wholeness, God. Please, not Down Syndrome.

This was my diatribe. I couldn’t go five minutes without whispering it under my breath.

Health and wholeness, God. Health and wholeness.

Dr. Lam, Addie’s surgeon, finally pushed through the waiting room door. His gigantic medical skill had been crammed into a little man’s body. He had been matter of fact and confident the past two days. We had placed all our hopes for success on his shoulders. Now he was back.

Sweaty and tired, he blurted the first good news we’d been given, The surgery was a success. We did it!

The room full of family and friends collectively exhaled. One bullet dodged. One to go.

The genetic tests would be in the next day. The surgeons had fixed the first problem. But there’s no fixing DNA. It is what it is.

To my knees again.

God, let it pass over me, I would pray. Health and WHOLENESS!

I reminded Him of how He owed me as much. I had done my part. I was a pastor, after all. I had done my bit for King and Country. I had made sacrifices. Now it was time for Him to kick in His.

I bargained with God. I pleaded. I whispered and yelled. I did everything I could think to do.

No sleeping. No eating. Nothing but crying, and then I ran out of tears.

The morning of the third day was still. We rose early, not having really slept anyway, and made our way into the hospital. Just off the lobby there was a private meditation room. Our extended family gathered and circled their support of Jennifer and me. They spoke softly and somberly. They prayed some, but I didn’t hear them. Jen and I were crammed into a corner, pleading with God, as though face to face Him.

Rightly or wrongly, I was pretty sure that if God didn’t heal Addison, my life would be over. I had been a pastor long enough