Authors: Kevin Malarkey; Alex Malarkey
Later that day, I arrived at the hospital room to remove Alex’s last few possessions. As I did, a little voice—a beautiful, magical, wonderful little voice—from the bed fell on my ears.
“Dad.”
Joy surged through my heart as I whirled around to look into Alex’s ecstatic, smiling face. He had struggled so hard to say my name a few days earlier, and now he said it with perfect clarity hours before we were set to leave the hospital. Tears of happiness ran freely down my face. Just as Alex found his voice, I lost mine. But that didn’t stop me from making a series of incoherent phone calls, trying to tell everyone what had just happened.
It was three months to the day since I’d last heard him say a word to me from the backseat of our car.
Was it a going-away present or a homecoming gift?
All I could think was,
Thank you, Lord! Thank you so much.
Home and Away
The next morning I was back at the hospital. Since we had virtually lived at Children’s for the past three months, the paraphernalia of life had grown to astounding proportions. Several vanloads were needed to make Alex’s move from hospital to home—and that was just our stuff! The real challenge was transporting Alex by ambulance. Beth and the other three children waited at the house while Alex and I stood by at the hospital. It says in the Bible that God will be with us whenever we go through deep waters, supplying the grace we need. Perhaps that’s why I didn’t know that this was only the first of twelve ambulance trips that Alex and I would take in the next few months. Had I known it the day we brought him home that first time, my heart would have broken. In my mind, as I drove toward home with Alex’s ambulance following, we were
going home for good
.
The prospect of ending the exhausting back-and-forth commute was an immense relief, but even so, it is difficult to convey to the uninitiated the physical, emotional, and relational strain of providing acute care 24-7. Unless you’ve been in the throes of it, imagining it won’t provide the full picture. Like a pencil that has spent too much time in the sharpener, Beth and I were so low by this time that all we could manage was sheer survival. Just keeping the family functioning required more than we had to give, but we had to (and willingly did) give it. Consequently, Beth and I had nothing left for each other. I would never consider divorce, yet I have no difficulty understanding why marriages not based on the Rock but caught up in traumatic circumstances end up there.
We were highly anxious, to say the least, about being directly responsible for Alex’s care in our home, with the “backup” miles away. We had so many questions. What would it be like caring for Alex under our own roof? Could we manage the task, even with the assistance of visiting nurses? What if a medical emergency arose? Then there were questions about Alex. Just how long was his youthful spirit going to hold up? He’d shown so much heart, such a positive attitude, and a fighting spirit, too. He simply had no surrendering within him. How many of us would have yielded to despair after waking up to paralysis and a breathing machine? But was there a limit? Could we, as his caregivers, follow his lead and keep from becoming discouraging influences ourselves? Sometimes it seemed as if
he
was the one keeping
our
spirits up.
In the midst of our flesh’s weakness, God had never been more present in our lives, and I did thank and praise Him. But there were so many more needs. I had to confess a great deal of fear and apprehension about the future. I wanted badly for this to work and to prove wrong all the people who said that we or Alex couldn’t handle home care. Deep down, though, I wondered if we were doing the right thing.
Beth was struggling as much as I was. She really needed the Lord’s strength and courage, and she needed her husband’s undergirding support. She was worried about the nursing situation, which was complicated to set up and manage. Even though Beth and I are naturally independent, we had become dependent on skilled medical assistants. They had become our security blanket. There had been plenty of minor emergencies during the hospital stay. What would we do during a “minor” emergency if the trained nursing staff happened to be absent? With Alex on a ventilator, we were constantly mindful of the urgency of his next breath. A few moments of malfunction could mean his death. This thought alone took a constant toll on our emotions.
So this was a gargantuan step. How many times we had earnestly prayed for this day, this homecoming—but as they say, be careful what you pray for. What we gained by being together again as a family we lost in medical skill and immediate professional help.
I continued along the highway toward home with the ambulance carrying Alex a few hundred feet behind. The homecoming nursing arrangement still hadn’t been finalized. Couldn’t these people get their schedules straight? Like most people, even on a good, stress-free day, I have a low threshold for red tape and bureaucracy. This day, with Alex coming home, assuming the full responsibility for his care . . .
Help me to chill out, Lord
.
I sighed and called another number—a friend who was a nurse. After confessing my doubts and growing anxiety, I asked, “Do you think I should turn this car around and lead the ambulance right back where we came from? Are we making a huge mistake? Maybe we’re just not ready. Tell me what you really think.”
She encouraged me to hang in there, and within a few minutes, I was finally heading up our lengthy driveway. Rounding the last corner, I saw Beth, holding baby Ryan, and Aaron and Gracie, jumping up and down, waving me in. Their glowing faces were just what my heart needed. In those few moments, the worst of the anxiety melted away. I had so much to be thankful for: my wife, my children, and Alex awake and home, mind and spirit intact. Yes, indeed, much to give thanks for.
I parked near the house and was quickly mobbed, but the main attraction soon commanded everyone’s attention. As Alex, strapped to a gurney, was rolled down a ramp, tears ran down our faces. Somehow Alex’s arrival punctuated the end of something and the start of something more. We hadn’t anticipated our response to his arrival and couldn’t stop crying. It’s funny how such a moment can catch you off guard. The presence of paramedics, a respiratory therapist, and other medical personnel soon refocused our attention on the work of moving Alex and all the medical equipment into the house.
Home but Not Alone
We had decorated the walls with brightly colored banners welcoming Alex. Beth had been putting in long hours getting the house ready, tidying the rooms for the constant flow of visitors, and making space for all the medical equipment that would need to be installed. Meanwhile, of course, she had three small children to watch—two of them quite active.
Meals came flooding in like manna from Heaven. The wonderful people of the church did what God’s people seem to do with excellence: the ministry of the covered dish. They had an organized plan for making sure Beth could at least avoid laboring over a hot stove.
Two men showed up to assemble the swing set, which still sat in its boxes these many months since we’d bought the house. And that’s the way tasks would be accomplished around the house for a long time. Whenever there was a job to do, two or more men would show up and get it done for us. Our pastor was a regular visitor, as were so many others who wanted to pray with us and offer love and encouragement. One thing we definitely didn’t have to cope with was loneliness. We felt incredible support, locally and from distant parts.
Other medical professionals began arriving at regular intervals. There was an occupational therapist, a physical therapist, a speech therapist, a respiratory therapist, and a cadre of nurses working twelve-hour shifts in our home, generally six days each week. In addition, their supervisor dropped in occasionally to make sure everything was going smoothly and to make suggestions. All of these people loved Alex, and he returned their affection and responded to their instructions with superhuman effort. At least for the immediate future, we wouldn’t be alone. But even with all this help, the hospital seemed light-years away.
The front porch became filled with strange boxes as the UPS truck dropped off new medical supplies virtually every day. The hospital had been our home for three months; now our home was becoming a hospital.
We could never have envisioned how many people would come and go each day. We all but needed to install a parking deck by the side of the house. Even when we were an ordinary family with four healthy children, our home had seemed quiet compared to the hustle and bustle that was now our daily environment. We were thankful for every visitor and every new medical device, however, because we knew these things made Alex’s life better.
Our challenge was to somehow maintain an intimate family circle and be the parents that all four of our children needed. Just having one-on-one time with each child required tremendous awareness and creativity. Time for Beth and me as a married couple—well, that was something of a distant memory. Maybe someday there would be a time when we could take off, go somewhere, and attend to nothing in the world other than nurturing our love and commitment. It was hard to imagine when that day might be.
By the time Beth and I hit our bed on the night of Alex’s homecoming, we were utterly spent. Alex was settled down, our children were in bed, the respirators and other machinery were humming, and a nurse was on duty. Tomorrow would be a little less frenzied, wouldn’t it?
Home and Hearth
The following day I rose from bed immediately feeling the pull of the computer. How had the homecoming gone? Our Internet friends would be eager to hear. Just as I was pressing the power button to log on, Alex’s faint but somehow insistent voice broke the morning stillness.
“Daddy?”
Though Alex was “speaking” to us regularly, it wasn’t always audible. He carefully mouthed every word he wanted to say, working his facial muscles as vigorously as he possibly could. Sometimes there was a little squeak of a voice, sometimes nothing.
I immediately gave him all my attention. He’d been so delighted to be home again, and what he wanted now was for me to start a fire in the hearth. For him, that was one of the exciting features of the new house, something you certainly couldn’t get at a hospital. For months his spirit had been animated by the hope of seeing his dog again, enjoying a fire, and being with his siblings more often. I wheeled him into the family room, where he sat for several hours, just basking in the coziness of his own home. The moment was perfect, because the morning sun revealed five inches of snow on the ground. That put a big smile on Alex’s face.
Now, as he sat in the family room and enjoyed the crackling fire, he could look through the window and see snow collecting on tree branches and birds at the feeder. These were things he loved, and there had been a time when we’d wondered if he would ever open his eyes again to such simple joys. Some would expect him to be looking out at the snow with bitterness, remembering how he had played in it the previous winter. But that simply wasn’t Alex. He had never seemed so pleased.
Viktor Frankl, author of
Man’s Search for Meaning
, was a survivor of the Nazi prison camps. He had observed the various ways in which men and women respond to suffering, and he wrote, “Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.”
Alex was living proof of that. This is why I have often said that at a certain point, Alex became my mentor, my coach for the right attitude in life. If such a little guy can be so resilient through terrible circumstances, then I know that I can face nearly anything. What I have seen in my son is a living demonstration of childlike faith, demonstrating the truth of what the Scriptures say:
(Romans 8:35, 37-39)
A Startling Conversation
During the quieter moments, Alex began to talk more frequently about the things that had occurred while he was away from us. For the first time, I began to suspect that my son had actually died at the accident scene. That possibility fit both the kind of injury he’d suffered as well as the kind of trip he professed to have had—a journey to Heaven itself. In addition, as the days went on, Alex was more insistent about his story. A fabricated account would have become inconsistent and eventually faded. Alex’s narrative, though, was taking on more substance.
Early on, we didn’t expect Alex to remember anything about the accident. But one of my greatest fears was that his memory would be gone altogether or, at best, be erratic. This fear surged almost as soon as Alex regained the ability to form sentences. As soon as he could get the words out, he asked me repeatedly, “Are you my dad?”
My facial expression didn’t change, but when I heard those words, my heart instantly began to ache, as if I had been rejected in some fundamental way. It wasn’t rational, I know, but when your boy wonders who you are, trust me, logic is no match for raw emotions.
Alex gradually became more adept at speaking, and conversations with him became very close to what we all consider ordinary. One of the earliest fluent conversations went like this:
“Are you my dad?”
“Yes, Alex, I’m Daddy.”