“I don’t know what mask you’re referring to,” I said. “We are the way we are, just as you see us.”
He walked away shaking his head. I don’t think this person at the church camp meant to be cruel or offensive when he asked me that question. He probably hadn’t been around many people with physical disabilities, because once you spend time with them, you gain a different perspective. They teach you to see beyond their challenges and into their hearts.
He may have been blunt or even rude in confronting us, but I actually felt some gratitude toward the stranger later. He reminded me of how far I had come in my acceptance of Nick’s disabilities since his birth. When I thought about our journey, I realized the biggest influence was Nick himself. He taught us how to accept and love him, which always reminds me of Jesus’s words in Matthew 18:2–6:
He called a little child to him, and placed the child among them. And he said: “Truly I tell you, unless you change and become like little children, you will never enter the kingdom of heaven. Therefore, whoever takes the lowly position of this child is the greatest in the kingdom of heaven. And whoever welcomes one such child in my name welcomes me.”
Nick taught us that he was not a “lowly” or disabled child. Instead, he was a child with disabilities that could be overcome with patience, creativity, and the healing power of love. We learned acceptance from Nick, who proved to be our greatest source of inspiration and enlightenment.
When he was born, we saw only his disabilities at first. He taught us that his lack of arms and legs would never define him or even slow him down all that much. Over the years, I’ve heard other parents of special-needs kids talk about recognizing their children as individuals who are not defined by their disabilities. We see quickly that they may have unique challenges, but their disabilities are just a small part of who they are.
THE CHILD AS TEACHER
Jesus was twelve years old when He strayed off from Mary and Joseph and other relatives as they returned home to Nazareth from the festival of Passover in Jerusalem. Three days passed before they found Him back in the temple “sitting among the teachers, listening to them and asking them questions,” according to the Bible.
You do have to wonder how Joseph and Mary could lose their child for three days. Nowadays they might have been jailed and tormented on social media for letting their child run wild. The Bible doesn’t mention any criticism. We’re told that everyone who heard the young Jesus speak in the temple was amazed at His depth of understanding and knowledge. Joseph and Mary were undoubtedly surprised to see that their Son already had a strong sense of His purpose on earth.
From an even earlier age, our son had a similar impact on Dushka and me, and everyone who encountered him. Today people often tell Nick that within minutes of meeting him, they are so engaged by his personality that they lose any awareness of his disability. Dushka and I understand this completely. Beginning in infancy, Nick taught us to see beyond his physical abnormalities to the dynamic and determined person who simply refused to accept a life limited in any way by his lack of limbs.
The point can be made that our experience with Nick is different from those of parents with more severely disabled children, such as those with severe mental impairments or limited ability to communicate. Yet Dushka and I have met many parents of children with Down syndrome, autism, and other more debilitating disabilities, and those men and women report similar experiences.
Fathers tend to think they will mold their children, especially their sons, into the people they want them to be. The truth is that, in most cases, our children teach us who they are and how to love them unconditionally. The man who stopped me in the church camp that evening did not understand that Nick was already guiding us not only to love him but also to be proud of him and to be grateful that he is our son.
This was a great gift to us. The lesson is one we have shared with many other parents of disabled kids. One father I’ve helped mentor in recent years has a son who, like Nick, is without limbs. This father once told me that it bothered him when people stared at his son or made comments about his lack of limbs. He felt guilty about his response.
“Should I keep him covered when I take him out in public?” he asked.
I understood that he was trying to protect his son from being hurt, but, as I told him, Dushka and I concluded that trying to hide Nick’s disabilities might cause him more harm than good. We didn’t want Nick to think we were embarrassed or ashamed of him. We knew that one day he would likely have to deal with people who rejected him, bullied him, or mocked him because of his disabilities. Our goal was to build upon his natural inclination to rise above his lack of limbs and to live as normally as he could. Nick was not easily daunted by his disabilities. He inspired us to deal as courageously with them as he did.
Sadly not every parent reaches acceptance. Some run away from their disabled child, their marriage, and their responsibilities. The impact on the children and on the entire family can be devastating when one or both parents turn inward or flee. I’ve heard of fathers who become workaholics so they don’t have to deal with a disabled child at home. Others turn to drugs or alcohol to self-medicate because they can’t escape the “Why me?” questions, their grief, their guilt, or their feelings of inadequacy.
This is tragic. I don’t judge them, but I fear they will never learn how much their children can teach them about themselves, about life, courage, and unconditional love. The trap many mothers and fathers fall into is that they think they have to become superparents who have all the answers, energy, and hopefulness their children will ever need. Most of us just aren’t that wonderful, but we don’t have to be. We only have to do our best, have faith, and lean on our loved ones and whatever other support we can find. We allow our children to lead us to understanding.
FOLLOWING NICK’S LEAD
Jesus taught a very valuable lesson about cherishing and taking care of today only. In the Bible, He asked, “Can any one of you by worrying add a single hour to your life?…Therefore do not worry about tomorrow, for tomorrow will worry about itself.”
This was the first lesson we had to learn. We expected at first that raising a disabled child might be a daily grind, a struggle, and an exhausting journey. It was not any of those things, mostly because of Nick himself. Thanks to his unstoppable spirit, it’s been a revelation. Our experiences with him have given us a much deeper awareness of the value of every human being, as well as a richer appreciation for life’s blessings and the staggering power of God’s presence in our lives.
My wife and I were not alone in our fight to create the best possible life for our child. Nick was eager to do all he could as well. Medical experts, psychologists, and therapists gave us their advice on what Nick needed, but in truth, he was our best source of information and inspiration. At nearly every stage of his development, Nick proved to be far more self-reliant than we had ever anticipated. We learned not to make assumptions about what he could and could not do, and we joined him in rejecting any labels others placed upon him.
Disabled children are every bit as individualized as normal children. They have much to learn from us, but they can also teach us a great deal—about their needs, their potential, their ability to overcome challenges, and the strength of their spirits. It is not unrealistic to expect that a disabled child may have severe limitations, but it is also true that many of them rise above and beyond expectations.
As we settled into life with Nick, his mother and I gradually came to the realization that there existed two sharply different outlooks in our family. Dushka and I tended to hover over our son, fretting about him, worrying that he might be sick or hungry, that he might injure himself or be injured by someone else.
Baby Nick, on the other hand, was blissfully unaware of his stressed-out helicopter parents. He was a smiling, happy, and quite energetic little guy, who seemed not the least bit troubled by his lack of limbs.
Slowly it dawned on us that since Nick was born without limbs, he
didn’t miss having them. Nick was like most infants at that stage of development. None of them move around much. They all have to be fed and bathed. We took care of all that for him, just as any other parents would for a newborn. This period gave us time to feel like normal parents, and it also allowed us more opportunities to learn Nick’s personality and to bond further with him.
Dushka knew the typical stages of development for infants, including the first three to nine months when most babies become strong enough to lift their heads while lying on their stomachs, then begin to roll over, sit up, and crawl. Children tend to do this at their own pace, of course, but most kids master these maneuvers within the first year.
We didn’t know what to expect with Nick. He could lift his head while lying on his back at three months or so—he seemed to have quite the strong neck—but we weren’t sure how he’d do in the next stages of development because he lacked limbs that usually provide leverage for rolling over and crawling.
This was a big concern for us. Dushka knew that crawling is an important milestone with far more significance than mere locomotion. It serves to stimulate brain development and also prepares the brain for learning. While crawling, the child has to make decisions on direction. Normally this gives physicians an early measure of the infant’s hand-eye coordination, an important factor in everything from reading and writing to catching and kicking. Crawling is important also for the development of vision, as the infant’s gaze moves from looking ahead to looking back down at his hands and the path in front of him.
FOOT-SHOULDER COORDINATION
We saw these early milestones as tests of our son’s ability to compensate for his lack of limbs. We wondered if he would have the mental capacity, adaptability, strength, and determination to develop his own methods for mobility. I still harbored fears that Nick might have to spend his life in bed. We had been told to expect that he might not begin to roll around, sit up, or crawl within the typical four- to eight-month time frame. Yet he was not a lethargic baby; in fact, he was very active, always moving his torso and squirming about. After his first few months, we would go to his crib and find that he had somehow repositioned himself. This gave us our first indications that Nick would not be content just lying in his bed. From that point on, every indication of mobility was a cause for excitement.
We were learning that even when doctors said there was no way, our son would come up with “Nick’s way.” When we picked him up and held him upright, we could feel that Nick was actually quite a strong little guy. He’d wiggle about and then show us that he could hold himself upright in a sitting position. He was quite pleased with himself, and we clapped enthusiastically to show him we were pleased as well.
Nick’s progression was slower than children with limbs, but once he got rolling, there was no stopping him. He was nearly a year old before I first saw him shift from his back to his side in his crib. He had been turning his head and lifting it up from a face-down position for a while. Then one day, I saw him rocking back and forth, using his larger foot for leverage against the mattress. After a few unsuccessful trials, he succeeded in flipping himself onto his side. This was exciting, encouraging, and comforting all at the same time.
NICK’S WAY
We were thrilled to see that he was not content to lie flat, and even more grateful that our boy was active and ingenious at finding his own solutions. He amused us early on by using his larger foot to spin himself around and around on the tile floor. It was our first hint that this foot would serve him in many ways. He also used it to play with toys we’d put in his crib. Some of them made sounds or played music when rolled around, and Nick quickly picked up on this. He learned to use the foot to compensate for his lack of arms and hands and quickly became adept at manipulating it. He’d play with toys by moving them about with his feet, delighting in the sounds and movement his efforts produced. There were a couple of toys with holes of various shapes, and he’d stick his foot into the openings to pick them up, shake them, and toss them around.
He seemed to delight in the bright colors and musical sounds. Dushka and I got the sense that Nick was just as eager to show us what he could do as we were to explore his capabilities. His increasing activity, his alertness, and his growing vocabulary of baby babble heartened us. This all seemed to indicate that he was not impaired mentally, and in fact, he appeared to be quite a sharp little guy.
I wish the doctors who had given us dark forecasts for Nick’s development could have observed him as a baby, mastering ways to move about without benefit of arms or legs. Dushka and I were inspired, touched, and thrilled as we watched our baby boy lie flat on the floor, then brace himself by placing his forehead on the carpet, and arch his back until he could scoot his lower body forward, slowly raising his body. Later he figured out a way to accomplish this by bracing his forehead against the couch or a wall. We never would have come up with that method; instead, he figured things out himself.
Neither of us realized it at first, but our attitude toward our son was evolving. We were becoming quite proud of his accomplishments. You could say we were his most enthusiastic cheerleaders. We still saw ourselves as his protectors and guides, but we also were discovering that our son had a lot to teach us. This was all part of a shifting focus from seeing our son’s disabilities and limitations—the things he could not do—to marveling at his abilities. Most parents experience this in some way. I was reminded of this just recently when I saw the photographs taken by a young Utah father of his toddler with Down syndrome. Alan Lawrence has created a blog (www.thatdadblog.com) to share his journey with his fifth child, Wil.
This dad was candid in admitting that when Wil was diagnosed with Down’s, he responded with fear and disappointment. Lawrence said all he could think about was that Wil would strain the family’s resources and be a burden. He was so ashamed at first that he refused to share baby photos with family and friends.
But then little Wil taught his father that Down syndrome did not define him. By the time he was a toddler, Wil’s loving and gleeful spirit had won over his entire family. Instead of feeling burdened or ashamed, the Lawrences felt uplifted and proud of Wil.
The exuberant toddler entertained his parents and brothers and sisters with his antic movements while lying on the floor or crawling about. He would wave his arms and legs as if attempting to fly like a superhero. To capture Wil’s soaring spirit, his father began creating photographic images that were altered to make it appear that Wil was soaring in the air above family members as they biked, hiked, explored nature, and went about their daily lives.
At first Lawrence, an art director, just published the heartwarming photos on his blog, but they drew such a strong positive response that they were soon picked up and published by media outlets all over the world. The family photos of Wil went viral, inspiring Lawrence to create more images and a calendar designed to increase understanding of Down syndrome and compassion for children like Wil. “I want other parents just starting out this journey…to have a more positive outlook on it than I did,” Lawrence said in one published interview.
I’m sure Alan Lawrence will learn, as I have, that our special children continue to surprise us with their capabilities throughout their lifetimes. This has been the experience also of D. L. Hughley, who is widely known as a comedian and television sitcom star, and the father of son Kyle, who was born with Asperger’s syndrome. Now in his late twenties, Kyle continues to surprise and inspire his father, who told of one learning experience in an interview on the television show Oprah: Where Are They Now?
Hughley said Kyle managed to get a college degree, but he remained very cautious and regimented. He did not like to try new things, so Hughley was surprised one day when his son volunteered to put gas in the car after they stopped at a filling station.
It was unusual for his son to volunteer to do something he’d never attempted on his own, so when Kyle got out of the car and went to the pump, Hughley was “a nervous wreck.” When Kyle returned to the c
ar and happily gave his father the credit-card receipt and the car keys, Hughley broke down sobbing. He told Oprah on her show that it was because Kyle did something he’d always been afraid to do. “I just didn’t believe he could do it. He did it. And I held him and I said, ‘You’re going to be all right.’ ”
EXCEEDING EXPECTATIONS
Dushka and I can relate to those experiences, as can most other parents with special-needs kids. We learned early on with Nick that it was wise not to bet against him or to place any sorts of limits on him. Time and again, he not only proved us wrong; our son flat out amazed us.
In the spring of 2015, Nick posted a video on his Facebook page that serves as a perfect illustration of this point in several ways. First of all, when Nick was born without limbs, we never dreamed he would be able to move about on his own. Second, we thought it was highly unlikely he would ever marry. Third, we thought he would never have children.
This joyful video demonstrates that we were dead wrong on all accounts. It’s just a brief clip (www.youtube.com/watch?v=qU5TrnR1meY), but it begins with Nick madly scampering into view with his giggling son Kiyoshi bounding after him, catching him, hugging him, giving a quick kiss, and then scampering off to continue their game of hide-and-seek. It’s a simple moment, but it’s especially poignant and powerful when you consider that we had so little hope for our son when he was first born.
The child whose birth made us despair has proven to be such an incredible blessing. This particular video is one of hundreds of inspiring videos Nick has done. They all serve as testimonials to how foolish it is to place limits on our disabled and special-needs children. By the way, just a few hours after that particular video was posted, admirers around the world had viewed it more than 1.5 million times.
Raising the Perfectly Imperfect Child Page 6