chapter 10
The Road Ahead
When people ask me if my faith is shaken because Alex hasn’t been fully healed, I respond with a confident no. The last two years have brought new, amazing reminders that we are still held in the palm of God’s hand.
After all our confident assertions about Alex’s full recovery, wouldn’t it be great to end the book with a story about Alex waking up one morning miraculously healed, leaping out of bed, and racing to the front lawn to play football with Aaron or climb trees with Gracie? But reality is more complex—more beautiful than that.
While Alex’s injuries restrict him in some ways, he has the same goals, dreams, and aspirations of any young man whose heart belongs to God. And he has the determination to pursue them!
The New Normal
For Alex, this means hard work—both physical and mental—every day. Alex is a trouper. Beth leads him through a one-hour stretching session each morning and evening to ensure that his limbs and torso remain limber. Beth provides all of Alex’s stretching therapy, and she cleans Alex’s trach tube site during each stretching session as well. Two times per week, a physical therapist comes to take Alex through different body movements using a variety of sophisticated equipment, some of which simulate walking.
We homeschool our children, as we had begun to do even before the accident. Alex loves reading and spends part of each school day working through several courses at an online charter school. He uses his mouth to control a mouse while navigating through his math course and other studies. The accident set Alex back an entire year academically, but he has already made up that year and is now at grade level.
Alex loves to attend church and even sings in the choir. If he is well and can make it, on Sunday mornings you will find him at Christ Our King Church. He is highly social and never misses the opportunity to interact with people. Alex loves dishing it out and has a reputation for getting the last word!
Alex can operate his wheelchair by moving his chin. He loves playing duck, duck, goose and hide-and-seek. (He usually does the seeking, but when it is his turn to hide, we cover him with blankets and pillows in an inconspicuous spot.) He also loves to play video games. Aaron and I are the “hands” and Alex is the “brains” when we play: “Turn here; no, slow down! Right, go right!” Alex even plays with Nerf guns. We dress him up in goggles and a chest protector and lay a Nerf gun across his lap, and he tries to run over the other players with his wheelchair.
As already mentioned, Alex is a total sports buff and can keep pace with the best informed. He is a fierce defender of his favorite teams and never misses games. When Alex heard that President Obama had picked Georgetown to upset the Bucks in the 2010 men’s basketball tournament, he had a thing or two to say about it. But what would you expect from a kid whose dad manipulated the system to have his son born in the hospital room with the best view of the Buckeyes’ stadium?
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When situations arise—and “many are the afflictions of the righteous” (Psalm 34:19, KJV)—God gives us His grace in proportion to our needs. Jesus Christ ministers gracefully to all who trust in Him.
I think about what the apostle Paul said after listing some of the things he had endured—he spent a day and a night in the deep, he was among false brethren, he was beaten—but then he said, “Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me” (2 Corinthians 12:9, KJV). So why would Paul glory in his infirmities? Because it is there that the power of God rested on him. Through his trials, a greater measure of the Lord’s grace was realized.
And so the real question is not, What is it like to be in a wheelchair? The question is, What is God like when you’re in a wheelchair? That’s the real question, because He does give abundant grace.
Pastor Robin Ricks, Christ Our King Church
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Occasionally someone will say to Beth or me, “How do you do it? I could never do that.” Well, when God gives you something to do, you just do it. What seems foreign to someone else is normal for us. Every one of us will, to some degree or another, be faced with a new normal sometime in life. When we embrace it and carry on, we tend to be a lot happier.
On one level, then, our family has developed new daily rhythms, and we enjoy play and laughter as much as any other. Yet that doesn’t mean we’ve resigned ourselves to things as they are now. God is still at work, advancing His purposes in our family’s and Alex’s lives. The last two years have brought new, amazing reminders that we are still held in the palm of His hand.
St. Louis
As Alex’s story continues to unfold, we can only thank God for the ongoing interest and support that has enabled him to make great strides forward. Beth has done an immense amount of research regarding Alex’s development. It was a long-standing dream to have him admitted into the Kennedy Krieger Institute (KKI) in Baltimore for their two-week program. KKI is the world’s premier institution for the treatment of children just like Alex. This facility offered the same type of therapy and treatment that Christopher Reeve received. But there was always a major obstacle—the $15,000 price tag for the treatment program. Now this isn’t a lot of money to God, but for us it was a mountain too high to climb. If Alex was going to go to the KKI, God would have to provide.
In the course of Beth’s research, she met Patrick Rummerfield, who works for the International Center for Spinal Cord Injury at KKI. Patrick’s interest in spinal cord research is personal. In 1974 he survived a car accident but was rendered a quadriplegic. He worked extremely hard through physical therapy and eventually recovered the full use of his limbs. In fact, he is the only fully recovered quadriplegic in the world. Today, Patrick races marathons all over the world. Beth has worked tirelessly to get Alex to KKI since shortly after the accident, and Patrick has worked right alongside her from the beginning.
In July 2009, the KKI dream was made a reality through the great generosity of many people. The first is Eric Westacott. In 1993, Eric was sliding headfirst toward home during an intramural college softball game and became a quadriplegic. This didn’t stop Eric. Today he is an attorney as well as the president of the Eric Westacott Foundation. He drives his own van, works full-time, and, more importantly, is a fantastic human being. His positive outlook is powerful, and the way he works tirelessly for others is truly inspiring. Every year Eric’s foundation hosts a golf tournament in St. Louis whose sole purpose is to raise funds to benefit spinal cord research. In 2009, the tournament proceeds were designated for rehabilitative efforts for Alex, specifically to send him to the KKI.
Eric and Patrick worked together to hold the golf tournament and silent auction for Alex. The Eric Westacott Foundation sent the funds for our family to travel to St. Louis for a week. This was exciting for all of us. We had not all traveled or spent any nights away from home together since 2004. We would drive the van paid for by our church, pull a trailer lent to us by a family whose son with a spinal cord injury had recently passed away, and travel with money provided by the Westacott Foundation.
When we arrived in St. Louis, Eric and Patrick gave us tickets to attend a Cardinals baseball game the next day. Alex and Aaron love baseball. It was the first time we had the opportunity to take Alex to a game. It was great fun. We went two hours early to watch batting practice, and we did our best to break the concession-stand spending record for a single game!
On Saturday we went to the sixteenth annual EWF Golf Classic Tournament. People fly in from around the country to participate. We had no direct connection with any of these people. It was humbling to watch all the effort that had gone into helping Alex.
During the banquet and silent auction, we had fun watching friends attempt to outbid each other to help Alex. Alex was introduced and received a standing ovation, and Patrick and Beth followed with short speeches. Finally, a giant check was brought out and presented to Alex. The Eric Westacott Foundation had raised twice the amount required for a two-week stay at the KKI. Alex would now be able to go for two separate two-week stays.
In a sense, my family and I were spectators that evening. We were the recipients of the foundation’s efforts, but we truly were among strangers. It was amazing to me that people who did not even know us could be so generous. Their attitudes were consistent with the kindness we had experienced from the church. God can use anyone to further His purposes. Jesus is always showing Himself through every situation, if only we are willing to see.
In addition to all his efforts with Eric and his foundation, Patrick also contacted the Christopher and Dana Reeve Foundation and asked them to help in yet another way. We had for several years been trying to acquire a specialized rehabilitation bike for Alex. Lorraine Valentini, a U.S. cycling champion, and her husband, Chris Reyling, had donated the exact bike that Alex needed to the Reeves’ foundation. The RT300 Functional Electrical Stimulation (FES) bike is designed to send electrical impulses to electrodes placed on the person’s muscles, causing the muscles to contract and basically perform a workout. Patrick was directly instrumental in acquiring this bike for Alex. Again, the generosity was amazing, our God, awesome.
Supernatural Awakening
Alex’s supernatural awakening to the most powerful and peaceful reality known to anyone happened when he was only six years old. Since then, his experience has been like that of a character in a movie who keeps enjoying a lavish heavenly banquet only to be jolted back every twenty minutes into scenes of family life and great physical hardship—before the final scene where everything comes full circle!
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One conversation with Alex can completely change a person’s mind-set and perspective of life. This is a testimony of how God is working greatly through his life and of his personal passion for Jesus. I have had talks with this young man that made me feel my faith is somewhere behind doubting Thomas’s! It is inspiring faith. But as deep as Alex is—and I could spend all day talking with him about God and what he has experienced—it is refreshing to know he acts like any other twelve-year-old, in need of correction and all.
Will Zell, pastor of evangelism, Christ Our King Church
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God has given Alex special grace to walk his own pilgrimage, creating an unusually beautiful and pure relationship with the Spirit of God. Alex’s body is not where we wish it were, but his spirit is far beyond where we could have ever imagined when we prayed, at his birth, that our son would walk closely with God.
Don’t misunderstand. This doesn’t mean that Alex is some otherworldly saint. Far from it, at times. He’s a normal twelve-year-old who loves practical jokes and sports, who at times is disobedient to his mom and dad, and who happens to be in a wheelchair.
Superman and Surgery
In 2003 world-renowned surgeon and researcher Dr. Raymond Onders installed a small device in Christopher Reeve that allowed him to breathe without a ventilator. In January 2009 Alex was scheduled to receive what many call the “Christopher Reeve surgery.”
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Mr. Matt, when you and my dad go to meet with the publisher people, tell them I’m just a normal kid and be sure to tell them I’m ornery.
Alex Malarkey, speaking to Matt Jacobson, literary agent for Kevin and Alex Malarkey
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Christopher Reeve led the way for adults. Alex would lead the way for children, as he would be the first child in the world to undergo Dr. Onders’s groundbreaking surgery. The operation involves implanting a small device that allows paralyzed patients to breathe without a ventilator by stimulating the muscles and nerves that run through the body’s diaphragm. In June 2008, the Food and Drug Administration approved the device for use in adults. University Hospitals in Cleveland got special permission from the FDA to perform the surgery on Alex.
Just prior to the surgery, we received a call from the public relations department at the hospital about the possibility of some media covering the procedure. “Sure,” we agreed, imagining a press release or perhaps a local news story. Surely we could provide a quick interview after all that was being done for us. We underestimated the media attention Alex’s surgery would engender by . . . just a little.
Beth, Alex, and I arrived in Cleveland the night before the surgery to take care of all the preliminary work at the hospital. We began completing paperwork and the minor pre-op tests. Before long, several reporters arrived from Cleveland’s Plain Dealer newspaper and a few television stations. We spoke with the reporters, but for some reason we didn’t ask ourselves, Why is the press arriving the night before Alex’s surgery?
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Christopher Reeve led the way. Chris had the courage to be one of our first patients and led the way for successful outpatient laparoscopic diaphragm pacing system with a home-based ventilator weaning program.
Dr. Raymond Onders, quoted at www.synapsebiomedical.com/news/reeve
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The next morning, I thumbed through the back pages of the Plain Dealer to see if there was an article. Finding nothing, I folded and tossed the paper on the counter before doing a double take. There was a major story on Alex on the front page of the paper. The front page? He hadn’t even had the surgery yet! It was a well-done article, although all the references we had made to God in the interview had been removed. (The writer later apologized to me for that. The original copy the reporter supplied to the paper had the actual interview, as it took place. An editor at the paper removed the references to God. I hope he or she reads this book!)
When we were driving to the hospital later that morning, I made a wrong turn. That pushed back our arrival time by a few minutes and gave the media crowd more time to gather. When we walked through the doors into the pre-op area, we discovered that about twenty media people with elaborate lighting systems had already set up their equipment, ready to begin filming. The morning started with a round of presurgery interviews with Beth, Dr. Onders, and me. At one point I went out to the lobby to get a cup of coffee. No sooner had I entered the room than a woman said to me, “Cleveland is praying for your son.” I was taken aback, again not aware of the massive interest in my son’s surgery.
“Oh, I am sorry,” she said. “Did you know you were on all of the morning newscasts?”
“No, I didn’t.”
“Well, you were. Everyone is talking about it. My church is keeping Alex in their prayers.”
Amid all the media activity and general business surrounding a major operation, I was keeping a close eye on Alex. I could see that following the preparation for surgery, he was feeling a little nervous. Dr. Onders could tell too. He’s a consummate professional who is highly attuned to his patients. Before long, Alex and Dr. Onders were talking smack about football. Alex made it clear that his Steelers were better than Dr. Onders’s Browns. Minutes later, Alex was wheeled into surgery.
Beth and I were not allowed past a certain point, but a man with a camera was. He filmed the entire surgery, while members of the media congregated in the hallway. Beth and I gave interviews during most of the ninety minutes that Alex was out of our sight. It was actually a wonderful distraction for us. Busy with endless reporters’ questions, we had little time to worry about Alex. Toward the end of the surgery, I noticed one of the reporters off by herself, praying. Beth and I made our way over to her, and the three of us were soon praying together.
Finally people began to leave the operating room, and soon after that Alex was wheeled out. He looked fine, with the exception of the electrical wire sticking out of his upper chest to which the external device would be plugged in. It felt a bit strange to see our child wired for an electrical current!
We were eager to hear from Dr. Onders and to get his perspective on the surgery.
“Everything went very well. The surgery was a success,” he began. “In fact, when I hooked up the device for a test run in the operating room, Alex took such a deep breath, he almost blew his chest out! Normally, we test the system for five minutes. With Alex, we tested for a full fifteen minutes. Everything went very well.”
We were thrilled.
Alex was rolled into the post-op area, where reporters waited in anticipation. Even before Alex had regained consciousness, various newscasters were conducting live reports for their organizations. Beth and I stood smiling next to the bed, dutifully following our instructions to stare down at Alex as the reporter talked about him.
With the cameras running, Dr. Onders walked over to Alex and said, “All during surgery, I was saying, ‘Go Browns!’”
Alex hadn’t fully regained consciousness. Even so, he was lucid enough to whisper in a faint voice, “The Steelers are in the play-offs, not the Browns.”
That’s Alex—always quick on the comeback, even if he is only half conscious!
In the swirl of media activity, we didn’t know what was next, so we were somewhat surprised when a schedule was pressed into our hands—our media appearance schedule, that is. Alex, it was explained, would need several hours to recover; in the meantime, we would be giving interviews. Isn’t that what we had agreed to do? Associated Press at 2:00, the Cleveland Plain Dealer at 2:30, etc. I had to ask myself, Which was more strange: that (a) the surgery to help my son breathe on his own was an outpatient procedure, or (b) we were being released from the hospital based on our media schedule?
The interviews went well, but not without at least one awkward moment. A television reporter seemed to relish the opportunity to have a direct interview with Alex.
“So, Alex, now that your ventilator can be removed at times and you can breathe with this new device, do you feel normal?”
Alex looked at her with intense eyes, a confused expression spreading over his face.
“What do you mean?” He paused for a moment then continued, “I am normal.”
The reporter was mortified for wandering into forbidden territory and apologized profusely. Alex spent the next few minutes making sure she felt better.
Another reporter with the Associated Press listened as his interview was consumed with my half-conscious son rambling on about the Pittsburgh Steelers. The reporter didn’t seem to mind. He then said something that caught me off guard. “You should write a book.”
“You really think so?”
“Yes, I do.”
“Do you have any specific advice about the process?” I asked.
“Yes. Work hard and never be discouraged. That’s it.”
Good advice for just about everything in life, I thought. It was on this day that I made the decision to write a book about Alex and his experiences. I had thought about it before, but that AP reporter’s encouragement was the beginning of the book you now hold in your hand.
We then did one more newspaper interview and headed down to the van. Accompanying us, the reporter from this interview assured us that she would include aspects of faith in her piece because she knew it was an integral part of the story.
The big article on Alex appeared in the newspaper the following day—lots of column inches and several excellent pictures. God . . . ? No, He wasn’t mentioned.
We made our way back to the hotel, and the phone rang. It was my mother.
“Hey, Mom, good to hear from you. Everything went great. Alex is a champ.”
“Yes, I know,” she said. “Alex looks great.”
“You’re two hundred miles away. How do you know Alex looks great?”
“Oh, the pictures of the surgery and post-op are all over the Internet. He really does look great. Maybe when you get back to the hotel, you can Google Alex and see what I’m talking about.”
Does this not say something about the times we live in? We weren’t even home from the hospital, and my parents, hundreds of miles away, had seen what went on in the operating room before I had! I did Google Alex when we arrived back at the hotel. There were more than four pages of entries. Incredible!
We intended to go home the next day but were snowed in and forced to stay another day in Cleveland. While this was a nice gift in that it gave the three of us a day to do nothing but relax, it also made the drive home a bit more hectic.
We had to get home in time for the kickoff of the Steelers’ first playoff game against the San Diego Chargers!
Stiffening the Spine: The Young Man Who Is Alex
Anyone who has spoken with Alex will testify that one thing Alex doesn’t lack is spine. His physical spine suffered from atrophied back muscles and was badly curved, but when it comes to the spine that really counts—strength of spirit—Alex has no lack. This boldness, coupled with what he has seen and continues to experience of the heavenly world, has molded Alex into a dynamic witness for Jesus Christ. If you meet Alex, you’re going to hear the gospel.
To help Alex sit properly in his chair and fully benefit from Dr. Onders’s “Christopher Reeve surgery,” his doctors determined that Alex would need to have steel rods attached to his spinal column. On December 1, 2009, Beth and I filled our fifteen-passenger van with medical equipment for Alex as well as Beth’s suitcase, anticipating that the two of them would stay in Cleveland for two weeks while Alex recuperated.
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Alex is one amazing kid. You start out thinking that he probably needs encouragement, being confined to a wheelchair. Then you start a conversation with him, and immediately it’s the other way around. Alex lifts your spirits! He encourages you! That’s just Alex.
Dan Tullis
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The night before the surgery, Alex’s spirit was light, and we all had a great time joking around and hanging out at our hotel. But as morning came and we walked through pre-op procedures, Alex grew increasingly nervous. He asked a series of questions about what the surgery would entail, and then turning to me, terror marring his face, he said, “Daddy, I am afraid I am going to die.”
I’d had that same fear all week, but of course I hadn’t breathed a hint of it to him. Now where would I find words to comfort him? I gathered myself and said, “Alex, if you do, you’ll be home, and if not, we’ll move on with life.”
It’s hardly surprising that my comment brought him no peace. As we rolled Alex down the hallway, he became agitated and slurred his words. The nurses assured us he would not remember going down the hall.
We were told surgery would take between five and eight hours. Beth chose to pass this time in the waiting room. I walked restlessly through the grounds surrounding the hospital. Beth had a pager. I had a cell phone. We were nervous. Alex’s spine was curved at an 89-degree angle, and he had to be cut open from the base of his neck down to his hips.
The surgeons gave us progress updates a few times. They finished in about four hours. At one point, Dr. Onders showed up to tell us he had just checked on Alex. Three people were sewing Alex up, he explained, and this would take about an hour. When the surgery was done, we were informed that it had been a tremendous success. Alex’s spine was now perfectly straight, and he was recovering in the ICU.
Alex was awake when we first saw him, but he was pretty out of it. Beth stayed with him in the ICU, and I returned to the hotel. I returned in the morning to make sure Beth and Alex were okay and then headed back home to be with the other three kids.
Due to complications, Alex had to spend the next three weeks in the ICU recovering from his surgery. During this time Beth stayed with him every night, rarely leaving the room. What Alex experienced physically for the next fifteen days almost defies description. Alex’s Army was praying. It was a battle of titanic proportions. At one point, Alex lost his vision. He had tremendous problems getting air, and his blood pressure repeatedly switched between extreme highs and extreme lows. Alex’s words came out as a faint whisper. Several times, he was sure his fears about dying were coming true.
As trying as this time was for Alex, we were reasonably confident that he would pull through. The medical staff worked mightily to stabilize him, even as he failed to improve for many days. At one point during this time, the team of doctors and other medical staff—about eight people—assembled around Alex’s bed to collaborate. Alex’s flaccid body was flat on the bed, he was extremely weak, and his vitals were unstable. He continued to have problems breathing. In his compromised condition, Alex had only one thing on his mind. He lifted weary eyes to look at the medical team and in his now feeble, whispering voice asked, “Do any of you have a personal relationship with God?”
“I do,” one person said. The rest of them exchanged quick glances.
Alex then began to talk about Jesus to the rest of the medical team. He never once mentioned himself or his own circumstances. He was only concerned about the other people and their relationship with God through Jesus. Because he had so little breath, Beth would lean down, listen, and then act as Alex’s interpreter. When he was finished, one of the medical people smiled and said, “Alex, you are amazing.”
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Every time I leave Alex after spending a little time talking with him, I ask myself, “Why don’t I ever feel sorry for him?”
Rachael, friend of the Malarkeys
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Alex responded, “God is amazing. I’m just a kid.”
Over the next week Beth continued to give me updates as Alex talked about God with virtually every person who entered his room. One day a nurse came in when Alex was too exhausted to speak. He looked at his mother and said, “You tell her.”
When Alex finally returned home from Cleveland following a 180-mile ambulance ride, I asked, “Alex, did you tell everyone you saw about Jesus?”
Alex smiled and said, “Daddy, please. Of course I did!”
This is why, when people ask me if my faith is shaken because Alex hasn’t been fully healed, I can respond with a firm no. Certainly Alex is going to be fully healed, whether here on earth or in Heaven. How that occurs is God’s choice, yet I am totally convinced that his healing will occur in this life.
God has touched so many lives and brought so much good out of Alex’s pilgrimage that I know God is not only directing His plan, but He is also directing the timing of His plan. That’s where our confident hope rests.
And . . . It Isn’t Over Yet!