RUNNING WITHOUT LIMBS
When Nick was an infant, we were delighted that he could roll over, sit up, and stand just a few months behind what is considered normal. Dushka and I had doubted that our son without legs would be able to achieve mobility on his own. So imagine our surprise when Nick began moving about the house upright and walking. We couldn’t even figure out how he was doing it at first. After observing him, we saw that he used his larger foot to raise himself up and then rotated his hips to move forward. If he did this slowly, there was a barely perceptible hop to his motion. When he went faster, it was like a gallop.
I am always touched when Nick talks about his recurring dreams of running at full speed through a field and about what a joy it would be to do that one day. The truth is that he can dart about quickly on his own for short distances. His brother and sister and cousins will attest that as a youngster he was quite the competitor in their rough-and-tumble living room soccer matches. In that confined area, Nick was pretty much equal to them all.
Dushka and I were grateful for his mobility and his determination but also more than a little concerned that Nick would injure himself or be injured by his playmates. He was so aggressive and uninhibited in his play that other children forgot about Nick’s vulnerability. If he fell, he didn’t have arms to catch himself or to protect his head from hitting the floor or furniture. I was a bit of a wet blanket at times, always cautioning Nick and the other kids not to play so rough and to be careful. Of course, none of them paid much heed to old worrywart me. As Nick would say, “Dad, it’s not like I’m going to break an arm or a leg!” He did manage to get through childhood without any serious injuries, even though he took some nasty falls.
As an adult, Nick often tells stories of his daredevil exploits like surfing, skydiving, and snowboarding. He’s also been known to have his friends and caregivers deposit him in overhead compartments on airplanes to frighten other passengers or to place him on baggage carousels as a prank. Rest assured, this sort of behavior didn’t begin in adulthood—he was fearless and uninhibited from the start.
One of his favorite childhood pastimes was racing up and down the neighborhood streets while lying on a skateboard, often towed behind the bicycles of his brother and other playmates. I’m glad I didn’t know until years later that they would sometimes mount him on their handlebars and wheel him around all day.
A MOST DIFFICULT LESSON
For most of Nick’s childhood, he was an upbeat, positive, and irrepressible youngster. He was a source of joy for everyone around him. Yet if you are familiar with Nick’s journey, you are likely aware that in childhood and even in adulthood he has had occasional bouts of despair and depression. This is often an area of concern for people with disabilities, but in all candor Dushka and I were caught off guard when Nick first began having dark thoughts as a child.
Despite his fun-loving demeanor, Nick has a very serious and contemplative side. Even as a child he would engage us in conversations with thoughtful questions that were surprising in their maturity and depth. He was probably around eight or nine when he first asked us why he was born without limbs, what caused them not to grow, why God had made him that way, and how we felt when we first learned he had no limbs.
Dushka and I knew these questions would come one day, and we had decided to be truthful with him because we feel that honesty and transparent relationships are important for integrity and true love. Children are very sensitive and quickly pick up on family dynamics and stories even when we think they’re too young yet to understand. We knew Nick might find out one day about our emotional upheaval at his birth, and we wanted to be the ones to tell him the full story. We strived to protect him and assure him that he was loved and valued.
The goal was to gently share the fact that although at first we were aggrieved and fearful because of his disabilities, we quickly came to love him. Dushka did tell him also that we briefly considered putting him up for adoption, but only because we weren’t certain we had the ability to cope or the resources and knowledge necessary to raise a child without limbs.
At first Nick was hurt when told of our initial concerns after he was born, but we talked through it, and we felt that even if he didn’t fully understand right away, he would come to terms with it as he grew older. We always emphasized how much we loved him and how proud we were of him. Still, it was just a short time after that heart-to-heart talk that Nick gave us cause for concern about his private thoughts and his emotional state.
His younger brother, Aaron, came to me one night in his pajamas just after we’d put the boys to bed. He seemed very upset. He said Nick had just told him something scary. “Dad, you better talk to Nick. He just told me that he’d probably kill himself by the time he is twenty-one,” Aaron said.
Nick often would descend into darker moods and serious thoughts at night when he was tired, but I’d never heard him say anything as alarming as this. Mortified, I hurried back to their room, sat beside Nick in his bed, stroked his thick mop of blond hair, and asked him what was on his mind.
He then began asking the sort of what-if questions that parents often dread.
“What if something happened to you or Mum? Who would look after me?”
“What if I could never get a job? How would I support myself after you were gone?”
“Do you think I’ll ever get married and have a family of my own?”
These are difficult and emotional questions for any parent. I gently talked with Nick about his fears and doubts, wishing I had a magic wand to dispel his very legitimate concerns. It seemed I was making some headway soothing him, until my son revealed to me that he had harbored suicidal thoughts and impulses to act upon them.
“I have thought it would be better to just kill myself so you and Mum and Aaron and Michelle could have normal lives. The other day I was up on the kitchen counter, and I thought about throwing myself off, but I wasn’t sure if it was high enough to actually kill me,” he said tearfully. “I just can’t stand the thought that I’ll always be a burden on you and Mum or on Aaron and Michelle.”
Oh my! I was stunned but tried to control my own emotions while calming him. I did my best to reassure him. I cuddled and held him close. I told him that even though we would be gone at some point, there would always be family, extended family, and friends to help and support him if he needed them.
“There are many people who love you, Nick. And most of all there is God who loves you more than us all. He will provide all you need if you hold Him in your heart,” I said.
I reassured him that we loved him and would miss him. That night, I did all I could to let him know that our initial concerns and fears at his birth quickly had given way to a deep love for him and that we believed he had a bright future. After our talk, Nick seemed reassured. I made him promise to come to me anytime he had concerns.
Still, I didn’t sleep well that night or for many nights. Dushka and I discussed ways we could build a stronger emotional foundation for our son to prevent any further suicidal thoughts. We kept a close eye on him in the months that followed, making sure to give him hugs and reassure him every night.
FRIGHTENING REVELATION
When Nick revealed his suicidal urges to us that night, we had no idea he had actually made a suicide attempt. He did not tell us that until a dozen years later, during the writing of his first book, Life Without Limits. He had decided to reveal the suicide attempt in the book because he wanted it to serve as a cautionary tale to other young people. Suicide had become a major issue, especially for teens, and Nick felt it was his responsibility to speak out. His primary message was that life is a gift and that there is always reason to hope for a better tomorrow. His own life serves as a wonderful example that God’s plan for us is often beyond our wildest dreams.
While writing this in his book, Nick realized he needed to prepare us, so he told us the story for the first time. We were stunned when he gave us the details. On the afternoon prior to telling us of his suicidal
urges, he had actually made several attempts to drown himself in the bathtub.
How could we have missed this? Where were we when he needed us?
Nick filled us in on the frightening details. He’d begun experiencing nagging feelings of hopelessness and despair a few years earlier. For years he had prayed every night, asking God to give him arms and legs. He could not fathom how a loving God could deprive him of limbs, and that led him to question both his faith and his worthiness.
It was around this time that Nick first experienced bullying and cruel remarks at school. While he was adept at fitting in and doing many things that other kids did, Nick could not escape the thought that he’d never be able to compete in sports, hold hands with a girlfriend, or hold his children in his arms.
He had growing fears about his future, including his ability to support himself as an adult and whether he’d ever marry and have a family. He’d reached the age when other boys were finding girlfriends, and Nick feared no girl would like him because of his lack of limbs. Our son said he feared he would be a burden to us for his entire life.
Wave after wave of dark thoughts tormented him, and he couldn’t shut them out. He’d catch himself thinking things like, If I just jumped off this countertop, I would probably die in the fall and could end it all now. It’s very scary for me to consider that our son was thinking that way and we didn’t know it.
A LIFE AT RISK
Nick later told us that he tried to fight off the self-destructive urges, but they were unrelenting. Dogged by thoughts that he should just end his life rather than continue on, he decided to drown himself in the bathtub. He asked me to fill it with water, pretending he just wanted to bathe and chill out a bit, as he’d done so often. When I left the room, he immersed himself and made several attempts to stay underwater.
Gratefully, Nick couldn’t go through with it. Visions of Dushka, Aaron, Michelle, and me grieving kept filling his mind. He knew that his suicide would haunt us for the rest of our lives, and in the end Nick decided he could not do that to his loved ones.
You can imagine how difficult it is for me to even write about this. To think that we nearly lost Nick is just terrifying. We can’t imagine life without him, and it has taken us a long time to get over the guilt we feel that he even considered suicide as a child. In our talks with him about this near tragedy, however, we realized that Nick did not follow through with his suicide attempt because we had done something right: he knew we loved him and that losing him would torment us for the rest of our lives.
Nick told us that his love and concern for us was more powerful than his despair. In retrospect, I think Nick told Aaron about his suicidal thoughts because he knew in his heart that his brother would come to us. I believe Nick wanted us to know. He wanted our help and intervention.
For that, we are all grateful, of course, yet the depth of Nick’s despair at such a young age haunts us still. We will never again assume that we fully comprehend the burden he carries, even as he inspires millions around the world. He has had periods of depression since that episode, even as a young adult. Most of them occurred when he was exhausted from his world travels, lonely and hurt because of failed relationships, or overwhelmed by business and financial pressures. My son has a tendency to take on many burdens because he has so much faith in himself and in God. We are always encouraging him to take more time off with his family, which is where he finds the most joy and peace.
You may think you know your child and your child’s mind, but as we learned in our son’s case, a child with severe disabilities can have a very complex and secretive emotional life. Our experience with Nick’s suicidal thoughts taught us some important lessons:
• It is important to always keep open the lines of conversation with children and to actively engage with them as often as possible to get a read on their emotional lives. It’s often said that you should listen even to the unimportant things they have to say so that they’ll come to you with the truly important things later.
• No matter how well we may think we know our children, there are secrets and hidden corners in their minds that we may have difficulty detecting and understanding. Parents need to be informed about warning signs, alert to dark thoughts, and prepared to seek professional guidance.
• We must never take lightly expressions of fear or despair about the future. When your child speaks of these things, even in jest, it is a cry for attention and a warning sign to address his or her emotional life.
Experts say that for most people with disabilities, suicidal thoughts spring not so much from any physical challenges but more from bullying, social ostracism, and their concerns about being a burden to their loved ones. The American Association of Suicidology reports that teenagers with dyslexia are more likely than normal readers to think about and attempt suicide. Penn State researchers found that the rate of suicidal thoughts and attempts among autistic children is twenty-eight times greater than for typical children.
Nick’s attempted suicide taught me that no matter how close you may feel to your children—and no matter how well you think you are communicating with them—there is still room for darkness to creep into their hearts and minds. Dushka and I had felt we were doing everything to the best of our abilities in protecting Nick and monitoring his emotions and behavior, but kids can put up a facade of happiness and well-being even when they are going through dark periods.
PROTECTING OUR CHILDREN
Feelings of discouragement or despair can escalate quickly, change our perspectives, and convince us that our lives lack value or meaning if we don’t take measures to counter those thoughts. Children are just as vulnerable as adults and probably more so because they may not know where to turn. Parents should keep that in mind and be alert for any signs of mood shifts, changes in eating patterns, withdrawal from friends and family, and other uncharacteristic behaviors.
Today Nick is considered one of the most prominent voices speaking out against suicide to young people around the world. Educators and government leaders in the United States, Europe, and Asia invite him to address young audiences to give them hope and encouragement. Thousands of people have told him that his speeches and videos have helped them overcome self-destructive thoughts and urges.
His story is a cautionary tale for us all, especially the parents of special-needs boys and girls, men and women. Despair and depression are insidious threats. We never know when they will twist the thinking of those we love, but we can always make sure our children know they are loved and appreciated.
A pastor once told a story about a woman in his congregation who complained to him that her husband did not love her. Every time they met, she complained about his lack of attention. Finally the pastor called the husband in for counseling.
“Your wife has been sharing concerns with me that you don’t seem to love her or care for her anymore,” the pastor said.
The husband replied, “Pastor, on the day we were married, I told her I loved her. When that changes, I will let her know.”
I’m afraid it doesn’t work that way with spouses or with our children! Just because you work hard or do things for them, you cannot assume that those you care about know the depth of your feelings or that they don’t need to be reminded. They need our hugs and kisses. They need us to be interested in their lives and to spend time with them.
Giving time to your kids is the greatest gift you can provide. Talk to your children and let them know they can confide in you or ask you whatever is on their minds. Stay close, keep your ears and eyes open, and listen intently with the desire to understand their perspective. By allowing our children to show us who they are and what they need from us, we all enjoy richer and more rewarding relationships.
• Understand that your child is a complex individual not defined by disabilities or labels.
• Let your child teach you who she is, how she can be reached, and the meaning of unconditional love.
• Focus on what your child can do rather than what
he cannot do. Encourage and support your child by allowing him to set his own pace.
• Keep the lines of communication open and always assure your child that she is loved and valued. Do not assume she is okay even if she says she is.
• Monitor your child’s moods closely and stay in regular contact with his teachers, especially in the preteen and teen years.
My nephew, Nate Polijak, is a registered nurse in Australia. During training for that job, he got in a bit of hot water because of his cousin Nick. Nate’s instructor was teaching the class how to take a patient’s blood pressure. When the instructor asked if the students had any questions, Nate thought of Nick and asked, “What if the patient has no arms?”
“Then you would use a vein in the thigh,” the instructor said.
“But what if the patient has no legs?” Nate said.
“Okay, wise guy, why don’t you get out of here!” demanded the instructor.
He kicked Nate out of class. Nate did have a reputation as a joker, and he had to talk fast to convince his teacher that he was asking these questions out of concern for his cousin Nick, who had neither arms nor legs.
Parents often joke that they wish their babies arrived with specific operating instructions. In our case, this was no joke, especially when it came to Nick’s medical needs. We had no idea how to raise a child without limbs, and neither did most of the doctors we encountered. Even a procedure as simple as taking a blood sample becomes much more complex and dangerous when the patient has no limbs.
Whenever blood tests had to be done on Nick, there was considerable debate on how to go about this. Some nurses would prick the toe on his little foot. Others wanted to tap his jugular vein, which can be dangerous. Dushka often had to get aggressive and play her registered-nurse card because she thought caregivers were winging it while treating our son.
Raising the Perfectly Imperfect Child Page 7
