Raising the Perfectly Imperfect Child Page 4

  COMING TO A DECISION

  I understood why they had reacted so strongly to Nick, because Dushka and I had similar responses initially. Up until Nick’s birth, neither of us had known or seen an infant without arms or legs, or one with the small, undeveloped feet protruding from his lower torso. It is human nature to be unsettled when first viewing such an unusual body.

  While seeing the nurses’ reactions was hurtful to a degree, I also felt my paternal protective instincts kicking in. This was my son, and I wanted to shield him from cruelty—intended and otherwise. I also had the growing sense that as little as I knew about raising such a child, no one else would accept and father him like I could.

  Dushka and I had not yet made a decision on putting Nick up for adoption, though my heart was telling me all I needed to know. We were coming to terms with our reality. We had some additional time to make up our minds, however, because Nick had a urinary tract infection, and our doctor wanted to keep him a bit longer in the hospital. My wife and I returned to our home, leaving the baby in our doctor’s care while we deliberated on the future of our family.

  We discussed all our concerns and the options for moving forward. It helped that we came from a similar culture, family background, and faith. I won’t say we didn’t have disagreements or heated moments. We were under tremendous stress, and we’d both had sleepless nights. Still, we listened to each other.

  This had to be a mutual decision. We knew we needed to be on the same page because neither of us could raise Nick on our own. Some of the medical staff had said initially that Nick might not have a normal life span, but Dushka assured me that was not the case, especially if he received proper care and support.

  As we weighed our options, Dushka began to emerge from the shadow of sorrow. I knew my wife was back when she began talking less about the challenges of raising Nick and more about finding answers and solutions. She suggested to our medical team that we meet with other parents who had successfully integrated their disabled children into the home. She wanted to know how they coped, what tools they’d found, what adjustments they’d had to make, and how they helped the child deal with everyday life.

  Parents of a child born with disabilities are often advised to seek out others who are further along in raising similar children or to join support groups of families in the same situation. We did not have those resources. We could find no other children born like our son. If nothing else, we thought maybe other parents might have found prosthetics, wheelchairs, or other equipment to provide their children some measure of independence.

  It would have been so helpful—a miracle, actually—to find an older child with the same challenges as Nick. We might have learned from the parents how to make our child’s life easier, what solutions they’d worked out, what resources they’d found to overcome disabilities. Unfortunately this was a miracle that did not come about for us.

  MOVING TOWARD ACCEPTANCE

  The medical staff told us they could not find anyone born with the same disabilities as Nick. The individuals with most similar disabilities were Australian victims of Thalidomide poisoning. That drug was once used to ease nausea in pregnant women suffering from morning sickness. It was banned once its horrible effects were known.

  We were provided contact information for a woman in Melbourne’s Beaconsfield Upper area whose daughter had stunted arms and legs. She was then around five years old. We visited this family hoping to gain some insights and maybe even some hope. The girl had enough of each limb to allow her to be fitted with typical prosthetics that would not have been suited for Nick. The only special equipment the child had was a plastic mushroom-shaped stool that she sat upon. By swinging side to side on it, she could make the stool scoot across the floor.

  Initially Dushka and I were uncomfortable, and we felt there wasn’t much we could learn from this child and her mother. We didn’t really benefit so much from talking with them as we did from observing their interactions. It was obvious the mother had limited resources and her daughter had serious disabilities, yet what struck us was their loving relationship and the shocking normalcy of their lives. Neither of them seemed burdened or overwhelmed. They were getting by as best they could without complaint.

  I’ve often thought about that visit and the influence it had on our ultimate decision to raise Nick ourselves. Up to that point, I had a difficult time imagining myself raising a child without limbs as I could foresee only hardship for Nick. The child we visited had severe deformities in her limbs, yet she seemed to be a happy and positive child who did not appear to be overburdened by her disabilities.

  The lesson I took away from that visit had quite a lasting influence on me. I learned that rather than being anxious about the future, it was better for us to accept Nick’s challenges and deal with them day to day. Jesus taught this principle in His Sermon on the Mount: “But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.”

  In the same vein, Mark Twain said worrying is like paying a debt you don’t owe. We don’t want to be so overburdened by what tomorrow might bring that we are robbed of the joys of each day. Yes, we should plan ahead, but there is wisdom also in taking each day as it comes and finding joy in each moment.

  I think Dushka and I both saw that the girl and her mother were living in the present, dealing with the challenges as they encountered them, and my wife and I were touched and encouraged by that as we reflected on our visit.

  After some additional discussions with our parents and other friends and family, we agreed to take Nick home and do our best for him. In truth, I never thought we would do anything else. He was our child. We went to the hospital the next day and met with the social worker and shared our decision. Once it was done, much of our stress dissipated. We’d been ruminating and fretting over this decision and the potential implications if we went one way or the other. We were relieved to make up our minds and open our hearts to Nick.

  One of the Bible verses I read that inspired me during this period featured the story of the angel God sent to Mary. When the angel told the unmarried virgin that she would give birth to a son, she said, “How can this be?” The angel replied, “With God nothing will be impossible.”

  Dushka and I were at first as incredulous as Mary had been. Then, like her, we decided that our faith could sustain us. With God’s help, we could raise this child and help him overcome the many challenges that awaited him. From that point forward, our primary focus was to give Nick everything he needed to become a faith-filled, confident, and self-supporting adult. We never looked back or regretted our decision to raise him, and our love for him grew stronger each day.

  • Be aware that you are grieving, and let it play out.

  • Give yourself time to recover emotionally.

  • You will need more rest than usual in the early days because of the stress.

  • Do not blame yourself or your spouse for your child’s disabilities.

  • Think about the long term in making early decisions.

  • Get all the guidance and advice you can from experts in this field and from other parents.

  • Take time to absorb, adjust, and adapt.

  • Understand that those close to you are mourning too.

  • Your life is changing, but it will be manageable if you take each day as it comes.

  Only a week or so before Nick’s birth, a friend had asked me if I thought I could handle raising a disabled child. I don’t know what made him think of the question. It certainly surprised me.

  My quick response was, “No.”

  I didn’t give his question or my answer any more thought until a few days later when I had to face the reality of raising a child with severe physical disabilities. I was even more terrified than I’d imagined. In my initial despair I even thought of the Bible passages about Jesus praying in the Garden of Gethsemane. H
e was fearful as He faced dying on the cross for our sins. At one point He prayed, “Father, if it is possible, let this cup pass from Me.”

  God did not alter the plan for His own Son, and He did not for mine. I had to accept that this was God’s plan and hope He would give Dushka and me the strength to see it through. To our everlasting gratitude, He did provide us with the strength, and over time God opened our eyes to what has proven to be a remarkable path for Nick.

  FINDING STRENGTH

  None of us know what we are fully capable of handling. Most of us underestimate our strength. We often don’t factor in the resources available to support us, particularly from our faith, families, friends, and community. Today there are so many more social-service agencies and advocacy organizations for the disabled than there were during Nick’s childhood. I wish we’d had more places to turn. I’m glad parents have them now.

  We did find that simply taking Nick out of the hospital to our own home made a big difference. We began to regain our equilibrium. Therapists and psychologists who work with families with special-needs children say this usually is achieved by reaching out for support from family, friends, and the larger community. Like many parents, we slowly came to accept our new reality, and then we instinctively worked to create a “new normal.” This was an effort to restore balance in our lives. We sought a more positive and proactive environment with lower stress by focusing on acquiring knowledge and finding solutions.

  The path to acceptance is not an easy one. It certainly wasn’t for my wife and me. As we have explained to Nick over the years, we weren’t sad that he was born; we were sorry for the great burden he’d been born with. We also had to deal with a broad assortment of feelings ranging from guilt to inadequacy. Our minds were reeling from all the medical information and decisions we had to make. On top of all that, we were questioning our faith and our God, which meant our primary source of strength was weakened.

  It helped that once we returned home, we shifted from merely reacting, which was largely a negative experience, to taking positive actions. Those actions included some routine baby-tending matters like feeding, dressing, and bathing Nick, as well as meeting with medical experts and therapists to educate ourselves on his needs.

  The most beneficial step was ending our period of reclusiveness and opening the doors once again to our loved ones, who’d been waiting patiently for the opportunity to reach out and give their support.

  Initially Dushka and I had isolated ourselves because we were so overwhelmed. We often talked about feeling as if we were caught in a bad dream and unable to awaken. Sociologists and psychologists refer to feelings of disorientation during a crisis as anomie. It is the sense that you’ve lost your bearings and you don’t know what to do because so much has changed so quickly. Our experience with Nick proved to be quite typical for parents in our situation, but at the time we didn’t have that knowledge to comfort us.

  This disorientation was further reinforced by our sudden immersion into an unfamiliar world with its own terminology and language, a world marked by often-grim meetings and intense, sometimes baffling and contradictory conversations with physicians, therapists, and social workers.

  We had been staggering through the days and were unable to sleep at nights, haunted by an urgent need to make critical decisions that would have an impact on the rest of our lives. What are we going to do with this child? How will we do it?

  One of the most common issues faced by the parents of newborns with disabilities is that they don’t get to bond as quickly with their children as other parents. Sometimes that is unavoidable because these children often require immediate medical treatment, even surgeries, and then they go to intensive care units.

  When Nick was born, doctors and specialists had to assess him. Dushka was also distraught, which limited their time together. Then doctors had to treat Nick’s urinary infection, which meant he couldn’t go home with us even if we had wanted him to at that point. He remained in the hospital for about four weeks.

  Once we had time alone with Nick at home, we were able to bond with him in a natural way that eased our stress. We began to establish our new normal—our life as a family with our unique, ever-surprising baby boy.

  REACHING OUT

  My advice to other parents in times of crisis is to find ways to bond with your child as early and as often as you can and to fight the urge to go into hiding and dwell on things beyond your control. I understand that it is very difficult to socialize when you are grieving, but those who love you and know you best can handle you at your worst. They may also give you advice that you need but may not want to hear. In our experience, they provided wise counsel and badly needed perspective.

  My father was a rock during those early days in Nick’s life. While I was a wreck—distraught and panicked—my father was utterly calm and clear eyed. He could not comprehend my emotional turmoil, and he made it clear that he saw no reason to even consider putting Nick up for adoption.

  His mind-set was: “Why would you even talk about adoption? This is your child. You are accountable and responsible for raising him. You can handle it. If you can’t, we will do it. If you don’t have the strength, God will provide it.”

  My memories of his face during this tormented time are vivid. His jaw was set. His eyes were intense. My father was a disciplined man, especially in times of challenge. He possessed unwavering faith and a powerful moral grip. He expected me to do the right thing, no two ways about it. His belief was that life was not supposed to be easy. Accept that and move on.

  He reminded me of Peter’s words in the Bible: “Dear friends, don’t be surprised at the fiery trials you are going through, as if something strange were happening to you.” My father, who had lost his own dad as a child and grew up in poverty, possessed a fortitude forged in hardship beyond my experience and understanding.

  His name was Vladimir Vujicic, a strong name for a strong man. He was a warrior, but not the sort of soldier you might imagine. As tough as he was, my dad often reminded us that his name in Serbian means “Peace rules.” This might have served as his life’s motto. He was drafted by the Yugoslavian army in World War II and served on the front lines as a medic because he followed his Christian faith and declared himself a conscientious objector. He refused to bear arms or kill. His refusal in warfare was met with derision and outrage by many of his superiors and fellow soldiers. They tormented him and tried many times to force him to kill.

  My father was frequently transferred to different units in the battlefields, where his job was to retrieve the wounded and treat them. He came under fire, bullets hitting all around him, but he did not fire back. Every time he joined a new unit, there would be guys who resented and challenged him. Dad said one officer told him, “Even if no one else made you fight, I will make you fight. If you don’t, I will make you dig your own grave, and I will shoot you on the spot.”

  “Go ahead and shoot me,” my father said. He would not back away from his beliefs.

  Another time his superior officers left him alone in camp to guard it. They deliberately left loaded weapons there. When they returned, they hid on the perimeter and ambushed him, firing into their own camp, pretending to be the enemy. They were trying to force him to take up arms to defend himself. He stood his ground even when his life was threatened. They called him a coward, but it took incredible courage for him to remain true to his faith and his beliefs.

  GAINING PERSPECTIVE

  When we are feeling embattled, in the middle of a crisis or when faced with daunting circumstances, we can easily convince ourselves that our situation is impossibly difficult. Taking a step back to gain perspective can provide substantial relief. My father never lectured me on this. I realized it when he and others of similar backgrounds counseled me on parenting our disabled son. My father’s wartime experiences were only one element of a difficult life. He also endured persecution for being a Christian under a Communist dictatorship. At times he and my mother had to attend churc
h services conducted in secret locations. They could have been imprisoned if they’d been caught. They fled to Australia when my father was forty-eight years old and started a new life in a land where they did not speak the language.

  My mother was another close example of someone who had endured far greater hardships than I would ever know. Her name was Nada, which in Serbian means “hope.” She was always a great sounding board. I could talk to her about anything and everything.

  That did not mean she always agreed with me. Like my father—and Dushka’s parents too—she believed from day one that we should face up to our responsibilities and take Nick home. She and my father did not understand why we were so tortured. For them it was a given that we would accept our son and raise him.

  Dushka’s parents, who shared similar backgrounds of hardship, felt the same way. Life was difficult for them in a rural area of war-torn Yugoslavia. The Communist regime imposed severe taxes. Medical and social services were limited. Sanitation was primitive. Two siblings born before Dushka died in infancy. Another child born after her also died.

  Her family had to cross the Alps to escape before immigrating to Australia, where things were better but still not easy for them. They expected life to be difficult, and they expected us to shoulder our burdens. My parents reminded me that Jesus told His disciples, “If any of you wants to be my follower, you must turn from your selfish ways, take up your cross, and follow me.”

  Our parents said that we must be fully committed to Nick and make him the priority in our lives. We respected our parents. They put our challenge with Nick in perspective, and we were humbled. They had dealt with even greater challenges throughout their lives, so why shouldn’t we face our own? Dushka and I realized that if our parents could find the strength and courage to overcome all they had dealt with, then we could raise our disabled child.