To ask why suffering is allowed is a very natural response and part of the walk of faith for those with special-needs children. We may wonder and never understand what God is trying to teach us or how a child’s pain can demonstrate His grace and glory. Romans 8:38–39 says that nothing can separate us from the love of God. When our imperfect lives bring us pain beyond our comprehension, all we can do is remain faithful and surrender to His mercy and love. The question of why bad things happen to good people is always difficult, if not impossible, to answer. Those of faith often have to abandon any hope of understanding and simply rely on their spiritual beliefs. There is no easy answer for anyone with a suffering child.
Some parents who have raised special-needs children say there are rewards to be derived from the experience, but many also ask if those rewards are worth the high price paid by the child who must struggle through life. Christians generally take the view that our rewards await us in heaven. God does not promise us an easy life on this earth. His own Son paid the highest price of all when He died on the cross for our sins.
I come from a believer’s perspective, yet even if Nick’s disabilities caused me to deny God and put faith out of my life, Nick would still have no limbs. Faith only helps us view our circumstances and approach them from a Christian perspective of surrender. It does not guarantee solutions or an easy life on earth.
Despite many hours of fasting and prayer by everyone in our family and our church, and even by missionaries in other parts of the world, God did not deliver the miracle we sought for Nick. Instead, we had to move on and live with our son’s disability. We chose to believe, as the Bible tells us, that even with an amount of faith the size of a mustard seed, nothing is impossible; we can move mountains.
If we have true faith, God can do anything in our lives. Nick is proof of that. We can see that now. Yet when a child is born with disabilities or special needs, even the most spiritual parents will have questions about God’s intentions.
Christians are taught that before Adam and Eve were banished from the Garden of Eden as a result of their sins, there were no sicknesses or disabilities in the world. For that reason, Christians might wonder—as I certainly did—if a less than perfect child is created as some sort of punishment from God for sins committed or for lacking faith. Parents might feel also that God is being unfair to them. Resentment like that can stir anger and doubts about their beliefs.
Dushka and I went through all those negative thoughts and feelings. We learned that a great deal of faith is needed to overcome them. Even more spiritual strength is needed to reach the point of accepting that God doesn’t make mistakes. All children are born in His image to know Him and bring Him glory.
Dushka and I had quite a journey before reaching the point of accepting that a disabled child is created to be perfectly imperfect according to the design of our Father in heaven—for the purpose He has in mind. Like the fable of the woman who used her cracked water pot to nurture flowers as she walked with it each day, our imperfections have a purpose. We often can’t discover that purpose without first accepting that it exists and then searching to find it.
ACCORDING TO HIS PURPOSE
I was a lay minister when Nick was born. Before his birth, I had often preached about God’s goodness and His infinite love for us as reflected in Romans 8:28: “And we know that in all things God works for the good of those who love him, who have been called according to his purpose.”
After Nick’s birth I could imagine members of the congregation thinking, If this is how God treats good Christians, why would we want to serve such a cruel Father?
Members of our church were as aggrieved as we were. They joined us in prayer sessions and fasting to ask God for a miraculous restoration of Nick’s arms and legs. The Scriptures say God will take care of you and bless you if you obey Him. We felt we’d been obedient to God. We could not understand how a child without limbs could be a reflection of His love. The only thing I could figure out was that God was testing us just as He’d tested others of great faith, such as Job and Joseph in the Old Testament.
I eventually accepted that even the most traumatic events in our lives could lead to joy, fulfillment, happiness, and greater faith. Our experiences with Nick offer proof to other parents with disabled children that God does love them. They are not mistakes. They have purpose.
When bad things happen to us, it isn’t necessarily a punishment. How many times have “bad things” that happened to you turned out to be blessings in disguise? Nick’s disabilities were certainly perceived to be a bad thing, yet our son has been an incredible blessing. We’ve had many other examples of this in our lives. That is the reality of life on this earth. Dushka and I had to move beyond our doubts and fears and live in faith. It wasn’t always easy, but then again, maybe God didn’t want life to be easy for us. Maybe He wanted to test us so that when Nick grew up to be such an inspiring child of God, we would be all the stronger in our faith.
Because of our early struggles and the unanswered questions and prayers, we were blind to Nick’s purpose until God revealed it. Without our faith, we might never have been able to guide Nick and prepare him for the life he has today. Our faith gave us strength, motivation, and hope that were essential for Nick’s survival and happiness. We remained believers and planted confidence in our Father’s goodness in Nick’s heart. Today his own faith is the driving force for his purpose.
This same power is available to all who choose to believe. Jesus said, “Apart from me you can do nothing….In this world you will have trouble. But take heart! I have overcome the world.” The apostle Paul gained the same strength by believing, “I can do all things through Christ who strengthens me.”
In that spirit, Dushka and I wielded our faith as a shield against doubt and fear. We chose to make the most of each day, hoping for the best in the days to come. My wife and I tried not to overanalyze but instead to take hope in Scripture and its positive messages, such as these:
• God sees and knows best.
• He knows why, and I don’t have to understand it.
• He says He loves me, and I just have to accept and believe it.
• All things work for the good of those who love God.
• With each new burden, He will provide added strength to enable us to bear it.
We faltered in our faith after Nick’s birth, but our son eventually helped make us stronger Christians with his lack of bitterness, his determination, and his unflagging spirit. It was a gradual process. We didn’t share our return to faith with others at first. Over time we went public, reading the Bible and praying with our pastor and a few friends. We were still feeling our way, trying to wrap our heads around what it meant to be the Christian parents of a child who had seemed cruelly burdened by his Creator.
We came to a tentative acceptance, but we still had moments of doubt, fear, and confusion. Some questions about Nick’s future still haunted us. We couldn’t answer them, so we would try to pray them away. The process was like building muscle strength. You keep lifting weights until you fail, growing stronger until you push through to another level. In this case, we were building the strength of our faith even as we prayed and fasted for a miracle.
We took hope from examples in Scripture of God responding to His children seeking healing, including Sarah and Hannah, who were barren until He gave them the miracle of children. Jesus healed many lepers, the deaf, the blind, and the crippled. We’re told He brought Lazarus back from the dead. Yet there are examples also of those who were denied miracles because they lacked faith or because God had another purpose for them. Sometimes it seemed He wanted them or those close to them to have greater faith or more patience before they were judged worthy of healing.
King Solomon wrote that life becomes meaningless in the absence of God. When you believe that a new beginning awaits in life after death, the struggle on earth makes more sense. Faith, then, gives meaning to what is beyond our capacity to understand, such as His reasons for
allowing His children to suffer disabilities.
Even as we came to terms with being parents to our son without limbs, we grappled with the question of why God would inflict a child with such a burden. Our Bible studies provided some guidance. We’re told to rejoice in our sufferings, knowing that they can bring about endurance, which produces character and hope as God’s love pours into our hearts through the Holy Spirit (Romans 5:3–5).
We’re also told to count it a joy when we meet trials of various kinds (James 1:2), and we’re assured that “blessed is the [one] who remains steadfast under trial, for when he has stood the test he will receive the crown of life, which God has promised to those who love him” (James 1:12).
We had to hold on to the thought that while God is loving, kind, and fair, life on this earth can be uncaring, cruel, and unfair. We also had to accept that we are created to bring glory to God, and a disabled child can do that just as easily as a healthy child. God makes no promises that our lives will be pain free; He promises only that He will always be with us if we believe. We realized that we had to trust in His wisdom and good purposes, in His Word rather than in our feelings, and in His grace, which is sufficient for any trial.
The questions for God that dwell in the minds of parents of disabled and special-needs children are relentless. I still struggle even today, though I see that my son has a wonderful life and family and a purpose to inspire hope in people around the world. I still don’t fully understand the whys of Nick’s disability.
Does my son have to live without arms and legs to fulfill God’s purpose?
Couldn’t he have been just as inspirational as a man with arms and legs?
Is it not possible for him to lead thousands to Christ with a normal body?
Even though many questions remain on the table, there is no doubt that our deeply rooted faith has helped my wife and me to better cope with our son’s challenges. We know that God is the Potter and we are the clay, and the clay doesn’t get to say, “Why did you make me like this?” The Potter decides, and the clay either molds into what He wants or grows brittle and of little use.
Still we continue to hope for a miracle, and so does our son. As I mentioned earlier, Nick keeps shoes in his closet because he is waiting for God to respond to his prayers for arms and legs. His faith is that strong. I’m in awe of its depth even when he faces challenges that would send most people off a cliff.
TLC (The Learning Channel) did a special on Nick called Born Without Limbs, which first aired in 2015. There is a segment showing him taking off his T-shirt. He uses his teeth to pull it up to his shoulders; then he pins a bit of the T-shirt against a wall and contorts his body until he can slip his head out of the neck and remove it entirely. The simple act of taking off his shirt requires ten times as much energy and struggle for him than it does for the rest of us. That is his life and his burden, yet most days he bears it with grace and good humor.
My son has certainly surpassed me in the depth of his faith, and I’m grateful. He needs that power to fuel his ambitions and get him through each day.
A MATCH MADE IN HEAVEN
Dushka and I were still living in Australia when Nick began courting Kanae. We didn’t meet her face to face until she and Nick had been seeing each other for about three months. We did talk to her and our son on Skype a few times. She was very charming, a lovely young lady. It was obvious that Kanae was quite taken with Nick. She looked at him with such love, and she laughed at everything he said. As his father, I was certain that Nick was not that funny!
I’m teasing, of course, but any parent will agree that we get to know our children for all their talents as well as all their imperfections and faults. Even when they reach adulthood, we still think of them as children. We know them so well that when they find love, we can’t help but wonder if the other person really knows what he or she is getting into.
Nick’s lack of limbs meant he would be unable to do some things that husbands typically do, like helping to feed and dress their children. He would also need assistance from his wife at mealtime and when bathing and dressing.
This may sound harsh, but I did find myself wondering why Kanae, who could have likely married anyone she wanted to marry, would be willing to spend her life with a man who had no arms and no legs. It wasn’t that I didn’t think Nick was worthy of love, but we’d had some disappointing experiences with women he’d dated previously, including one whose parents forced a breakup because they didn’t want her to marry him.
After Nick had been dating Kanae for a few months and their relationship seemed to be serious, Dushka and I decided to travel to the United States so we could meet her. We wanted a better read on her background, her intentions, and the depth of her faith.
We also wanted to make sure Kanae knew what she was getting into if she married our son. We had no doubt he would be a great husband and father, but being married to someone without limbs would come with certain challenges. Most importantly, we had questions about the depth and strength of Kanae’s faith because we knew if she married Nick it would be tested, just as ours was when he was born. My wife and I once had believed our faith could stand any test. Nick’s birth and the challenges he faced as a child made us question God’s love many times as we raised him. We felt it would take a deeply spiritual woman to be his wife.
As Nick’s parents, we knew exactly what he could do for himself and what he needed assistance with. We had come to see that there would be many challenges for anyone who married Nick due to his intense travel schedules, the demands on his time and attention, and even the daily care and assistance he needed. His wife would have to support him, console him, hold him, and give him wise counsel in moments of doubt, despair, and uncertainty.
We had many concerns to discuss with Kanae, but on the deepest level this was about matters of faith. We believed that Kanae was in love with Nick. We wanted to be sure she had the spiritual strength to support and help Nick fulfill whatever his purpose might be.
He had pursued relationships with a few girls over the years, and he’d been hurt when they backed away. Most were well intentioned. These women liked our son and admired him but saw him as a friend rather than as a potential husband. Nick needed a wife who truly accepted him and loved him and would not hurt him or destroy his life by walking away after marriage.
MARRIAGES BUILT ON FAITH
We knew a few other disabled people with wonderful and devoted spouses. Among those we’d met were Nick’s friend and mentor Joni Eareckson Tada and her husband, Ken. Joni is a quadriplegic and the founder of Joni and Friends, which is a global advocacy group for the disabled. Ken is a retired high school coach and teacher. They married the year Nick was born, in 1982, and they have remained together, traveling the world to serve others with their Christian charity work.
Ken wrote a book explaining how an able-bodied man fell in love with a disabled woman. Their story is quite moving, yet they are also very candid about the many challenges they’ve gone through. Love can be stretched and stretched until it breaks, especially with the stress of a disabled child or partner. Ken notes that he found it physically exhausting and mentally challenging to be both husband and caregiver to Joni. He has had bouts with depression and dark times when he didn’t think the marriage would last. “If it wasn’t for the fact that I believed in God, I wasn’t sure I was going to make it,” he told an interviewer.
Their shared faith and honest communication has helped Ken and Joni weather many storms. They are exceptional people. Ken was a strong Christian when he met Joni, and he has acknowledged that his faith has been tested many times by the stress of their marriage. I was concerned Nick and Kanae might face similar challenges in their marriage, which is another reason we wanted to talk with Kanae before their relationship moved forward. Marriage is a wonderful experience most of the time, yet it can be humbling and difficult as circumstances change, passion diminishes, and harsh reality causes stress and frustration. The bottom line is that a relationship sh
ould not be based on mere physical attraction or the desire for marital status. Both spouses have to share basic beliefs and values, and they need to have an enduring commitment to sustain them through the inevitable and often unexpected challenges that life brings.
We wanted Nick to have a wife who was equally committed to their marriage. She had to be fully prepared for a husband who, despite his extraordinary determination and positive attitude, still has many physical challenges.
THE INTERROGATION
That was in our minds when we traveled from Australia to meet Kanae in early 2011. We had serious questions to ask her, but we didn’t mean to intimidate her. In retrospect, I can see why she came to humorously describe our little talk with her as the Interrogation. It was her first sit-down with her potential in-laws, and while we weren’t confrontational, we did want to make sure that her love and faith were strong enough to sustain a marriage to our son. Kanae was nervous that day, as anyone would be when first sitting down with the potential in-laws. Yet she handled our questions with grace, intelligence, and a surprising level of maturity. We understood where her inner strength came from when she told us about her family background. She and her siblings, who grew up in Mexico and spoke Spanish, were known as “the Japanese family” in their hometown neighborhood because they were the only kids with Asian features. Kanae’s parents divorced when she was in her early teens, which caused additional turmoil for her family. Their mother moved out of the home and later to the United States. Kanae and her siblings then lived with her father and helped him run his nursery and landscaping business.
Raising the Perfectly Imperfect Child Page 18