Authors: Kevin Malarkey; Alex Malarkey
Alex’s hope is that upon hearing how God has revealed Himself in Alex’s life, you will be drawn to the only One who provides true hope.
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?
Pastor Robin Ricks, Christ Our King Church
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!
Will Zell, pastor of evangelism, Christ Our King Church
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.”
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?