Raising the Perfectly Imperfect Child Read online

  What is important, I believe, is that we place no limits on our children. We should not burden them with our expectations, because our vision is no match for that of our Creator. There is a tendency to think a glass can be either half empty or half full, but there is a third option—the glass is always full. It may not be full of a liquid, but what is not liquid is oxygen. We usually measure only what we can see. The truth of things is often hidden from us, like the invisible oxygen that fills the glass.

  When Nick was born, his path in life seemed very steep. We failed to account for the human capacity to rise above and soar beyond. Beethoven gradually lost his hearing during the last twenty-five years of his life when he composed some of his most renowned symphonies.

  He was disabled as far as his hearing, but he didn’t write from what he heard; he created music from the heart. Stephen Hawking has thrived in a forty-year career as a theoretical physicist and author despite being severely disabled and, eventually, paralyzed by motor neuron disease. In effect he has no arms, no legs, and only a shell of a body. Heart is what really matters. The strength of our spirits can overcome nearly any weakness of the body.

  Over time our son revealed to us what we could not see when we looked at that limbless cherub in the maternity ward. He humbled us and forced us to open our eyes and our minds. Nick seemed incomplete at birth, but it was our perception that was flawed.

  FEAR VERSUS FAITH

  After Nick was born, Dushka and I had great trepidation—not only about his limitations, but also about our own. We did not feel at all capable of providing for the basic needs of such a child, let alone raising him to be a happy, self-confident, and high-achieving adult.

  Certainly we have not been perfect parents to Nick or to our other two children, Michelle and Aaron. Dushka and I have our strengths, in particular our shared faith, but we were tested in every possible way while raising Nick. The strength of our love for each other was tested many times, sometimes nearly to the breaking point.

  Yet, with God’s help, we brought Nick to adulthood. I’d like to say we molded him into the man he is today. The truth is probably more that we succeeded in not ruining the man God created Nick to be. I readily admit, for example, that Nick found his purpose as an inspirational speaker and evangelist without any guidance or even much support from me. I didn’t see that potential in him, but I didn’t try to stop him once he believed it was possible. I’m very grateful for that.

  I did suggest that he should have a backup plan, however, and I pretty much insisted that he get the education necessary to support that backup plan if he needed it. Nick didn’t thank me then, but he does now. I did it out of love, of course, and because it was our parental responsibility to guide Nick, sometimes blindly, sometimes with purpose.

  We began our journey with Nick with a very narrow focus on what he lacked. Over time, though, that view changed because Nick seemed to find ways to do whatever he needed to do or figured it out with help from us. Gradually our focus shifted away from what Nick could not do to what he could do. That simple shift in focus made a big difference in our feelings and our daily approach to parenting.

  Many parents whose children have severe disabilities seek us out when we attend events with Nick. Others write or e-mail us. Most of them give me more inspiration than I could hope to provide them. Still, just knowing that you are not alone and that others share your feelings and fears can bring solace and comfort. I am grateful for the opportunity to help other parents in any way possible. In that regard, being Nick’s father has brought many great rewards.

  BLESSED TO SHARE

  In the spring of 2014, Dushka and I journeyed to Vietnam to attend a stadium event featuring Nick, who by that time was an internationally known best-selling author, inspirational speaker, and evangelist. With more than 7.5 million followers on Facebook, 350,000 on Twitter, and at least twenty-nine YouTube videos, many with one to four million views each, Nick has become one of the world’s most well-known and beloved disabled individuals.

  Because of Nick, the parents of other disabled and special-needs children are drawn to us. They know we have been through what they are experiencing and have many questions, just as we did. When we began our journey with Nick, these questions kept us awake and trembling at night:

  • How will we keep this child alive?

  • Will he be able to feed or dress himself one day?

  • Is his mind damaged too?

  • How will we educate him?

  • Will our child ever have a normal life?

  • How can we help him be self-sufficient?

  • If we have other children, will they have the same challenges?

  • How do we explain his disabilities to him? To siblings? To other children?

  • How do we teach a child with so many challenges to love God and to know God loves him?

  • How do we give this child hope and a strong spirit?

  • How will we ever have the strength and resources we need to guide this child?

  Dushka and I are humbled and often brought to tears by the stories told to us by other parents. Mostly, though, we are grateful for the opportunity to provide them with hope, as well as a model for raising a physically disabled child into an accomplished and well-balanced adult.

  Nick often says that while he has never received the miracle he sought as a boy—to be made whole with arms and legs—God has put him in a position to serve as a miracle to others, to offer them inspiration and to encourage them in faith. My wife and I have been blessed in much the same way. We prayed for limbs on Nick’s behalf after his birth and for many years afterward. As you can imagine, we also prayed for wisdom, or at least someone to guide us in our efforts to parent a child facing a daunting future.

  During Nick’s childhood, we never found other parents who’d raised a limbless child from birth, so the help and insight we sought did not come. We had to figure it out ourselves through many trials and errors. Therefore, we are grateful to be able to give parents with disabled children encouragement, guidance, and practical advice based on our own journey.

  BLESSINGS BEYOND BELIEF

  I reflected on that journey during our trip to Vietnam with Nick. In this country so different from any I’d ever known, I felt peace and gratitude as thousands of people cheered for their hero, our son. Dushka and I watched in wonder as members of the audience jockeyed for positions to take his photograph, to speak with him, to touch or hug him.

  For years after Nick was born, Dushka and I had allowed ourselves little hope for his future. I could not fathom that he would grow into such a strong and accomplished man, let alone a husband and father. Nick is proof that none of us are limited by our circumstances and that all of us can create meaningful, fulfilling, and joyful lives if we choose to focus on our gifts rather than on what we may lack. All of us are imperfect. All of us are perfect.

  My son has written about those themes in his books, which have sold successfully around the world. My approach for this book is from a different perspective—a parent’s. My wife and I would never claim any special gifts for parenting. We were ill prepared in almost every way possible when Nick came along. We are both from immigrant families who fled religious persecution, so we do have some resilience and inner strength in our heritage. Nick’s success as an adult, however, is all the work of our truly remarkable son and God’s incredible power. How wrong can a parent be? Well, it turns out I can be incredibly wrong, and this is true for all parents. We can all be blind to the potential of our children, even those kids born without disabilities. I have always considered myself a man of strong faith. I’ve served as a lay pastor and established churches. Yet when my son was born without limbs, I did not trust that God had a plan for him, one that would far surpass anything my wife and I could imagine.

  Nick showed us the way. Even as a toddler, he taught us that his value and potential were beyond the reach of our limited vision. Our son is proof that through faith and determination, all thing
s are possible. And Nick is not alone in proving this point.

  As we observed on that trip to Vietnam and on many others with our son, Nick is a magnet for other disabled people. We’ve been overwhelmed and inspired by men, women, and children who have overcome incredible mental, emotional, and physical challenges to rise above and live beyond their limitations and circumstances.

  Though my wife and I once wondered if God was punishing us by giving us a child with no limbs, we have come to realize what a gift he is to us and to the world. Indeed, because of Nick we know for certain that Scripture is correct when it tells us that “all things are possible to him who believes.” More than ever we understand that what is impossible to men is possible to God.

  Where once we were devastated, Dushka and I are now proud and honored to be the parents of Nick. We are thankful that God used us as guides and supporters for such a courageous, resilient, faithful, and loving person. Our greatest gift through Nick, beyond any other—except maybe our grandsons, Kiyoshi and Dejan—has been the honor of serving as sources of hope, inspiration, and guidance to other parents of disabled children.

  This book is meant to be useful for all parents who feel overwhelmed or underequipped, and especially those mothers and fathers who have special-needs or disabled children. The primary goal is to light a path to a brighter tomorrow so that you, in turn, can guide your child to make the most of life.

  I encourage all parents to reject labels and to look instead into the hearts of their children. Teachers, physicians, and psychologists put labels on kids because that is what they know, but they don’t know what is inside the individual they have categorized as a slow learner, dyslexic, Down syndrome, disabled, or special needs.

  We always fought any attempt to label or marginalize Nick because we wanted our bright and unstoppable son to have every opportunity to prove his value in the world. Subjective assessments, perceptions, and prejudices are illusory. All children have strengths and weaknesses, and they can surprise you in so many ways. Our duty is to nurture, encourage, and motivate them, and help them build upon their strengths.

  Dushka and I know what it is like to carry the constant weight of guilt, frustration, and uncertainty that can accompany the birth of a child with special needs and disabilities. Our experiences with Nick taught us patience, flexibility, perseverance, and a depth of faith we’d never known before.

  TEACHING BY EXAMPLE

  Another important point I want to make is that the key to raising any child into a successful adult is to provide that child with a role model for success. As the classic Edgar Guest poem says, “There are little eyes upon you, and they’re watching night and day.” How you live is far more important than anything you say to your child. Children are very observant and will call you out anytime your actions do not match your words.

  All children are ideally made for the lives God intended and created for them. Sin and evil can thwart the plans of God, so it is up to us to help our children find and fulfill those plans. The guidance provided in this book will include and build upon what Dushka and I have learned and shared along the way in these specific areas:

  • Understanding that all God’s children are perfectly made, and maintaining a positive and proactive approach to parenting special-needs and disabled children.

  • Allowing yourself to grieve without guilt upon learning of your child’s disability.

  • Moving toward acceptance and adjusting expectations without losing heart or hope despite dealing with the additional stress and costs of raising a special-needs child.

  • Keeping an open mind, listening, and observing so that your child can teach you how to be the best possible parent.

  • Learning to be your child’s best medical advocate and knowing the right questions to ask of professionals.

  • Making sure all your children receive the love and attention they need and deserve, because the siblings of special-needs kids often feel neglected, guilty, or obligated to be “superkids” for their overburdened parents.

  • Choosing the best methods for educating your child and then dealing with the challenges that will come with any system or bureaucracy.

  • Preparing your child for the world while also preparing yourself to let go, which includes building a strong emotional foundation for dealing with insecurities and bullying and which allows your child to make mistakes and experience failure in order to grow into the most self-sufficient and productive adult possible.

  • Maximizing communication, seeking understanding, and spending time together as a couple and as a family to support each other and to nurture and love your child.

  • Leaning on your faith. We have experienced the power of prayer in our marriage, and every couple parenting a child should feel free to ask for spiritual guidance and help.

  Wherever Nick goes, his fans and supporters line up for hours to meet and hug him. In some cities, they’ve had to close down streets because so many want to just see him. We are often asked how we raised him to be such an optimistic, determined, accomplished, and faith-filled man despite the challenges of his disabilities. This book is my answer to that question.

  After God, Nick deserves most of the credit. My son’s approach to life offers strong testimony to the power of faith and the human spirit. When your child is old enough to read and comprehend, I encourage you to introduce him or her to Nick’s videos and books. Let your child see that someone born with an imperfect body can grow into a man with a perfect purpose, a man who lives, as he says, “a ridiculously good life.”

  • Your child’s disability does not define the person he or she will become.

  • Your first perceptions about raising your child will not be your reality. With time, the reality is often much more rewarding than you’d thought.

  • Often what seems at first like a great burden proves to be an incredible gift.

  • Know that many other parents have gone through this. Seek their advice and counsel at every opportunity.

  • You know only what you have experienced in the past; embrace what you are about to learn.

  • Have faith that you will find the strength and support you need if you remain open to them.

  No couple expects that unrelenting grief will be their most prominent emotion upon the birth of their first child. I feel uncomfortable even expressing that in print, especially because our son eventually brought so much joy into our lives and to millions of people around the world.

  Still, I want other parents of disabled and special-needs children to know grief is a common and understandable reaction initially. Eventually I realized my sorrow wasn’t so much over Nick being born as an “imperfect” child; it was more due to the loss of the “perfect” child we had been expecting.

  Many parents have told me they went through very similar experiences, and all of them, like me, felt guilty and confused by that reaction. I learned to forgive myself for these thoughts and feelings, and I encourage others to do the same. We are all human. Few of us have the strength of the Bible’s Job.

  Dushka, who was then twenty-five years old, went in for her final ultrasound examination eight weeks before Nick was born. During the procedure, the technician told her that our child was definitely a boy. The tech pointed to the screen on her ultrasound machine and said, “Look, it’s easy to determine the sex on your baby because his legs are not in the way.”

  At the time her comment seemed normal and did not raise any concerns, but her words would become haunting in recollection. Dushka did question her doctor during her pregnancy because she thought the baby seemed a bit undersized and situated low in the womb. He assured us that everything seemed normal.

  We had no reason to doubt the medical professionals because Dushka was one herself, and she respected their opinions. She’d also taken every precaution during her pregnancy. She had never been a smoker, and she did not consume any alcohol or take any medications during pregnancy.

  When Dushka went into labor, she refuse
d painkillers. Everything went as expected initially. I was in the birthing suite with her and the doctor and nurses. There was a tense moment early on when the midwife found that the baby was in the brow position, which means the head and neck are slightly extended so that the largest area of the head has to fit through the pelvis during delivery. Often a baby will tuck its chin as delivery begins, which is the desired position, but if the child remains in the brow position, doctors will do a safer Caesarean delivery.

  We were relieved when the midwife later found that our baby had moved his head into the more desirable position. At that point, I was also extremely happy I had talked Dushka out of her desire to have our first baby at home with me assisting in the delivery under her guidance. I would not have wanted to be responsible for handling a complication in the delivery process without a full medical team and a hospital’s resources.

  As it turned out my relief was short lived. The delivery room doctor used forceps to pull Nick through the birth canal. His head and neck came out, and then right away I noticed our son’s right shoulder looked unusual. The shoulder first appeared to be unusually shaped, and then I saw that there appeared to be no arm.

  It was difficult to tell for sure from my poor vantage point. The medical team moved in and blocked my view, so I had only a brief look at that one part of our baby’s body before they moved him to a far corner of the room for further examination. They said nothing.

  I didn’t want to believe what I’d seen. All the air seemed to drain from my lungs. Dushka had not seen our baby yet. Her view was blocked too. After delivery, she expected the delivery-room nurse to return quickly with the baby and place him on her chest, which was the standard routine. When that did not happen, Dushka grew concerned.