Our son can’t shake hands or give arm hugs, so his method for engaging with people is to make eye contact. Even as a child, he was so good at this that adults often remarked about his ability to communicate through his eyes. It was very important to him, then, to have wheelchairs that brought him up to a normal height so that he wasn’t always looking up to those around him.
As he was growing up, and even as an adult, Nick has tried to figure out what his height would be if he had legs. He estimates that he would have been nearly six feet tall as an adult. He likes his chair positioned to put him around that height, especially when he is with Kanae, which is understandable.
Nick became quite skilled at driving his motorized chairs at a very young age. He had a few crashes and mishaps over the years, but he mostly wore out his wheelchairs or outgrew them. I think he went through five or six of them before he hit the age of twenty-one. We were fortunate in that most were paid for through donations from organizations, including the Lions Club.
WHEELING ROUND THE WORLD
Nick now usually pays for his own wheelchairs, and it is no small expense because he has lighter but durable models that are suitable for transportation on airplanes for his global travels. He keeps more substantial wheelchairs at home for getting around the house and around town, often with his son and maybe even his wife on board. The mobility that a motorized wheelchair provides has changed his life, and that makes Nick highly sympathetic to other disabled people who can’t afford one.
Over the years, he has supported the efforts of his mentor, Joni Eareckson Tada, whose nonprofit Wheels for the World ministry has donated thousands of wheelchairs to disabled people around the world. And on at least one occasion, my son simply hopped out of his own customized wheelchair and gave it to someone who seemed to need it more.
This occurred on the final leg of nearly six months of travel in 2013. Nick, who was road weary to the point of exhaustion, was speaking in Columbia, South America, when he saw a limbless teen with one small foot. The boy was in a battered manual wheelchair. Nick was compelled to learn more about this young man. Through an interpreter, the boy said he lived in a small village but attended school in the city an hour away. Every day he was carried an hour to the bus stop so he could take the bus into town. After class, he made the hour-long trip back to his home. He told Nick that he wanted to continue his studies, but his lack of mobility had become a major concern.
Maybe it was because the teen’s disabilities were very similar to Nick’s. Maybe it was because it was almost Christmastime. But mostly, as Nick later said, “I felt God asking me to do something, to step outside my own frustrations and focus on the needs in front of me.”
Nick initiated a wheelchair swap, and the Columbian teen certainly got the better part of the deal. In fact, Nick later sweetened the deal and threw in a generator for the teen and his family after learning that the boy’s town had no electricity, which would be needed to charge the battery-powered wheelchair. “Never have I felt God move through me in that way,” Nick said.
Once again our son exceeded all expectations and made his parents proud. By the way, Nick finished the final leg of that tour riding about in the Columbian teen’s wheelchair because he didn’t have a battery-powered backup on the trip.
HEAVY LIFTING
As Nick grew, his wheelchairs became more sophisticated and heavier. His current model is more than 180 pounds, without Nick on board. The placement of the motor and batteries is important because they have to balance out the weight of the person in the chair. I was constantly telling Nick to slow down or be careful as he rolled up and down hills or ramps as a boy because I feared he’d fall over backward or hit something and crash forward. My warnings annoyed him, I’m sure, but that’s what parents do, right?
As anyone who needs a wheelchair knows, the cost of the chair itself is just the beginning. Most people need a vehicle big enough to haul the chair around, and a way to get the chair into that vehicle.
During Nick’s speaking events in Serbia in 2012, he was visiting with professional tennis player Novak Djokovic and his family at Novak’s restaurant. Late at night when he was to be dropped off at the hotel, there was no adequate-size taxi to transport his wheelchair. Novak’s father, who lived nearby, went home, picked up his vehicle, and kindly drove Nick and the wheelchair to the hotel.
Power wheelchairs are always a challenge to transport because of their weight. We have had both hydraulic lifts mounted on vans and portable ramps for SUVs. The portable ramps are less expensive and more practical in many ways, but they require careful use. The hydraulic lifts are bulky and costly, though easier to use.
When Nick was about six years old, we had a big van with a custom hoist that swiveled out from the car, dropped to the ground, and then reversed the process to load Nick into the van while still in his wheelchair. This was a handy setup that connected to the battery of the car and was fully automated. We had to make sure Nick and his chair were both secured before we moved the hoist, however. On one occasion, our son and his wheelchair went spilling out of the hoist in our driveway, and Nick took a pretty good blow to his chin. It left a scar. Nick has been known to blame the scar on a close call in a sword duel.
ACCESSIBLE LIVING
Whenever we’ve built or shopped for homes, we’ve looked for open plans with either no hallways or very wide ones. Wide doors were also a priority to allow access for Nick’s wheelchairs. We also tried to have easy access bathroom showers, and we devised low racks in them so Nick could get soap and shampoo by stepping on a foot pump.
The house we built in Melbourne next to the school he was going to attend in Keilor Downs was designed for Nick’s needs as we perceived them at the time, including heated floors because he spent so much time down there in the chilly weather. We stayed in that house until Nick was nine years old. We then moved to Brisbane and built a house there with a slightly different setup.
We’d been displeased with the efficiency of the floor-heating system in an ever-changing climate. The system took nearly twenty-four hours to warm the slab under the flooring, and often by that time the weather would change and it would not be comfortable for Nick. Then the slab needed another half day or more to cool, so we had to open windows to make it more comfortable.
As Nick grew, he was able to move about more on his own, either hopping about or using his adjustable chair to remain off the floor. He could also hop into the shower so we no longer needed a customized entrance. In Brisbane, which has a subtropical climate, we had little need of a heater or furnace. We used reverse-cycle air conditioners mostly for cooling in summertime, but also for heating when we needed to take some chill out on some winter nights and mornings.
LIFE WITH LIMBS?
Technological advancements and greater access have been beneficial, but Nick hasn’t abandoned his dream of a miracle. He still keeps a pair of shoes in his closet in case God decides one day to provide him with arms and legs. Over the years, many people have suggested that Nick should try man-made limbs while waiting for God to answer his prayers. This option has become more intriguing in recent years as science and technology have advanced significantly in the manufacturing of prosthetic limbs.
Dushka and I had once thought that artificial arms and legs might be a boon to our son, but our early experiences in this arena didn’t turn out like we’d hoped. When Nick was four and a half years old, the local Lions Club of Melbourne and Wholesale Produce Market began a nationwide campaign to fund artificial limbs for him. Their efforts resulted in the creation of a trust fund to finance this expensive proposition.
Before we knew it, the Lions Club had arranged for Nick, accompanied by Dushka and our younger son, Aaron, to travel from Australia to a highly regarded clinic in Toronto, Canada. Air Canada provided their air travel at no charge. They were invited to stay with a family in Toronto during the six-week visit. I could not go because at that time I was working as a cost accountant and going to university to complete my bu
siness degree so I could get a better-paying job.
Our interest in prosthetics had increased after we’d learned of an older lady, a Thalidomide victim, who’d received myoelectric arms, which use electrodes to capture the small electrical signals generated by muscles when they contract. The artificial arms can be programmed to respond to electronic signals. They can also be used to open and close a prosthetic hand on the artificial arms.
We weren’t sure this would work for Nick because his arm sockets are empty, so attaching prosthesis seemed like a difficult matter. Still, we thought it was worth a visit to see what the team in Toronto might figure out for him. Nick was very excited at the prospect.
The name of the Toronto clinic was the Hugh MacMillan Rehabilitation Centre (now known as the Holland Bloorview Kids Rehabilitation Hospital). Dushka found it to be a world-class facility with a caring and professional staff. She and Aaron spent many long hours in the lab with Nick, the star patient.
The first three weeks were taken up with assessing him, measuring his little body, and applying a plaster cast to make a mold so they could create a custom-fit frame. When Nick wasn’t being poked, prodded, or plastered, he and his brother roamed the corridors, making friends and playing with the other children in waiting rooms.
We were delighted that the clinic also provided swimming lessons for Nick, given by an occupational therapist in the center’s pool. He had already learned to float, but these sessions gave him greater confidence and better techniques. He took glee in creating his own little whirlpool by spinning himself round and round in the water with his foot.
A DIFFICULT FIT
Sadly there were also a great many frustrations and disappointments in this first experience with prosthetics. The original goal was to fit Nick with state-of-the-art myoelectric arms and hands controlled by muscle contractions and electrodes, but the prosthetic team quickly realized that Nick’s unique body was not at all suited for that technology. Since his arms had never formed in any way, there was not enough muscle tissue to work with.
Their plan B was to fit him with the older mechanical model that required Nick to manually operate his artificial arms and hands with switches. The metal frame for the mechanical prosthesis was made of lightweight material, but it was bulky. Once they had fit the arms by mounting them across his shoulders in a molded plastic shell with artificial arms and hands attached, they worked for many hours to teach him how to operate the switches.
Dushka said it was an emotional experience watching Nick’s determined struggle to manipulate the arms and hands. He failed time and again, but never once did he give in to frustration. Our son was very patient and persevered in learning to perform very complex movements to complete tasks with the clunky mechanical arms and hands.
Nick had to twist his torso in awkward ways to position the arms and hands correctly, but he eventually learned to grip items, including spoons and cups, so that he could pick them up, move them to his mouth, and feed himself.
Dushka found it quite surreal to see little Nick sitting in his chair, wearing a shirt, with arms resting, hands clasped. From just a short distance, the flesh-colored plastic limbs were quite realistic looking. She took photographs and sent them to me. For the first time, we had a glimpse of what he would have looked like if he had upper limbs. Wow!
We were grateful to the center’s staff and to all the people who made it possible for our son to be fitted and trained to use the artificial limbs. That said, we were disappointed that more advanced prosthesis could not be adapted for him at that point. We also realized it would take a long period of adjustment and practice before Nick felt natural wearing and using the mechanical arms, especially in school.
A FAIR GO
When Dushka and the boys returned home, we let Nick know how proud we were that he had tried so hard and learned to use the mechanical limbs. He put them on each day to practice with them, and he became fairly adept at using them. He could pick up his food and bring it to his mouth, scratch his head, and even shake hands. In the first few months, he enjoyed being able to pick up and play with his toys. The artificial hands gave Nick a very strong grip. His little brother, Aaron, learned to stay out of reach because Nick delighted in giving him a squeeze or a pinch.
The overall experience, however, wasn’t so good. Though Nick tried for more than a year to use the mechanical prosthesis, there were several reasons why this first experience ultimately failed. No matter how often he wore them and practiced using them, there was no escaping the fact that this particular model was very uncomfortable and awkward for our small boy to wear for any length of time.
Nick complained that wearing the prosthesis hurt his back. This was a major concern to us due to his scoliosis and the vulnerability of his spine. The metal frame covered in hard plastic also caused Nick’s body to heat up, and that was another serious issue because if his body temperature ran too high, he developed a rash and felt uncomfortable and perspired greatly.
Finally there was the fact that this particular prosthetic device did not do much to improve our son’s quality of life. In many ways, using it was more difficult. Nick had already figured out ways to accomplish most tasks, and his methods usually were simpler and easier for him and felt more natural.
We appreciated everyone’s efforts on Nick’s behalf, but after more than a year of watching him struggle with the prosthesis, it was not a difficult decision to put it in storage and let him just go back to being natural.
He gave it a fair go. Many people had suggested that we explore this option, and we’re glad we did. We also took into consideration the fact that Nick would have to be refitted at least every couple of years as he grew. Not only would that have been expensive, it also would have put him through many more hours in clinics being assessed, poked, and prodded.
There were times during the Toronto experience, and many times over the years at other hospitals and clinics, when Dushka and I felt enough is enough. It seemed invasive, impersonal, and sometimes exploitive. Sometimes we’d get no helpful feedback at all. Watching our child bravely struggle to please his doctors and parents sometimes left us wondering if the effort was worth the reward. Dushka’s mother-bear instincts were always to protect Nick’s quality of life and his self-esteem. Our feeling was that he had more than enough challenges in life without subjecting him to unnecessary stress and strain.
PROBING AND PRICKING
We discovered over the years that because a child born without limbs is fairly rare, there were physicians and researchers who were just curious or felt it would be a feather in their cap to examine Nick for their studies and papers. Some requested that we bring Nick to medical conferences; others asked us to send his x-rays. We reached a point where we decided not to cooperate unless there was some tangible benefit to Nick or a dramatic new development in technology or medical procedures. Of course Nick is now an adult, and these decisions and challenges rest with him.
Over the years we considered trying more advanced artificial limbs, but we always decided his quality of life would not be significantly improved. Nick may want to try again one day because there certainly have been dramatic advances. Some researchers are predicting that surgeons will be able to transplant entire limbs within a few years. That opens up all sorts of interesting possibilities.
Also, recent wars around the world have resulted in an astounding number of amputations. As a result, the United States government has become a major investor in the development of artificial limbs. The technology has advanced rapidly and now includes prosthesis that are lightweight and much closer to functioning like real limbs. In addition, there are now robotic exoskeletons that fit over the body or parts of the body, much like what is worn by the fictional character Iron Man.
These new technologies and medical advances are fascinating, but there is also the fact that Nick has made an incredible life for himself, just as he is. He may decide to leave well enough alone.
From my point of view as his father, I car
e only that he has a good quality of life and that he is surrounded by people who love him and care for him and want only the best for him. I don’t need Iron Nick or RoboNick. I’m very happy with just plain Nick, who is an incredible child of God and a blessing to us all.
• Become the medical expert on your child’s health and needs, and be prepared to fight for whatever is best for his or her long-term well-being. No one will care as much as you do.
• Know the laws governing the health-care rights of disabled and special-needs kids in your community, state, and country so that you can be an effective advocate.
• Prepare for every doctor, therapist, and hospital visit so that you know the right questions to ask.
• Keep detailed medical records and notes on your smartphone, laptop, and home computer for emergencies. Your records should include all surgeries, treatments for illnesses, injuries, and allergies, as well as all prescription and nonprescription drugs. Do not ever trust that your physician or emergency-room doctor is aware of your child’s entire medical history.
• Make the most of all medical and health resources, including support groups relevant to your child’s needs, online forums, websites, and expert blogs. Be cautious about information on the Internet, however, and never follow advice unless your child’s physician approves it or you’ve checked it out thoroughly with other experts and other parents.
Raising the Perfectly Imperfect Child Page 9
