His miracle has yet to come, but as Nick often says, God has allowed him to be a miracle for millions of others through his inspirational messages of hope and faith. I believe that is the purpose for each one of us, to be the inspiration and the light in our own corners of the world, no matter what circumstances we face. The Bible says that godliness with contentment is great gain and that we must give thanks in everything because that is the will of God in Christ Jesus. This is our role and our challenge.
Our conflicting views on faith healing led to some stressful moments. Our discussions were sometimes contentious and highly emotional. Having a child with disabilities will create pressures like that on a marriage. You have to work through them without attacking or hurting each other. It helps to keep your shared goals and beliefs in mind at all times during such disputes. In the end, we knew that we each had our son’s best interests at heart.
4. Keeping Your Love Alive
Caring for a special-needs child often requires 24/7 vigilance, and it stresses a family’s resources as well as a couple’s relationship. Dushka and I had to carve out time for each other as a couple whenever we could. It wasn’t easy, and we weren’t always great at rekindling the fires as often as we needed. We realized that to give Nick a proper foundation, we had to be on solid ground with each other. Husbands and wives can get so caught up in raising their children and providing all that the family needs that they neglect the needs of each other.
Taking care of your relationship by remembering and refreshing the love and affection that brought you together in the first place is critical. Your love for each other will strengthen you for loving and caring for your children. Many nights we would go to bed exhausted from caring for Nick when he was a baby. The best thing we could do on those nights was to end them in each other’s arms, even if it was just to hold each other until we fell asleep.
Finding time to be present and attentive to each other during the day was often difficult if not impossible, so how we related at night was important for keeping the bonds of our relationship strong. Sometimes couples with special-needs kids become so focused on the children that they feel guilty if they take time for each other. Dushka and I eventually realized that Nick needed his mother and father to be together more than he needed us hovering over him constantly.
We did our best to spend quiet time together each day and to occasionally ask a family member or friend to baby-sit so we could go out and get reacquainted as a couple. Relationship experts say even just twenty minutes a day can help shore up the foundations of a marriage under stress. Over time the intense passion of a couple’s early days together will likely diminish, but even spending a few minutes talking about the initial attraction can reignite those flames.
Take a break from discussing bills and medical issues for twenty minutes or so each day. Hold hands, snuggle, go for a walk, have a romantic dinner. Consider your enduring commitment and affection for each other to be a gift to your children that will keep on giving. In our case this commitment is not only to each other but also to God. The Bible talks about marriage being for life, and we take that seriously. We are accountable to each other and to God, so we make the effort to keep our love alive and our bonds strong.
5. Use the Lifeboats
Ministers and banquet speakers are fond of the oft-told story of the misguided Christian who does not heed warnings of an impending flood because he is certain God will send a miracle if the waters threaten his life. The same believer ends up on the roof of his house, surrounded by rising waters, yet he still turns down offers of escape from would-be rescuers in a canoe, a lifeboat, and a helicopter. Finally the waters engulf and drown him, and he finds himself face to face with God.
“Why didn’t You send a miracle?” the believer asks.
God replies, “My poor son, I sent you a warning. I sent you a canoe. I sent you a lifeboat. I sent you a helicopter. What more were you looking for?”
My guess is that this guy was holding out for the angel Gabriel to bring an ark. The lesson is, don’t miss the boat while waiting for a miracle. Take help where you can find it. This lesson applies to all people in crises or under intense stress and particularly to parents of disabled and special-needs children.
Dushka and I understand the siege mentality that makes couples want to simply go home, lock the door, turn out the lights, and mourn. We did that for a brief period after Nick was born. We isolated ourselves despite many helping hands reaching out to us. We needed time to wrap our brains around this life-changing development.
Then, after a month or so, we came out of our self-imposed exile, and eventually we welcomed every lifeboat that came our way. We were especially glad for the lifeboats of family and friends, pastors, social workers, therapists, government assistance, medical experts, local service agencies, and anyone who could assist us in helping our son thrive.
We advise other parents dealing with similar challenges to make use of any and all resources available. You are not alone. There are many resources. Don’t be too proud to accept help from family members, friends, and others reaching out to you. The Internet puts the world at your door, and while it is advisable to be cautious about the sources you rely on, there is a wealth of valuable information out there.
You might want to begin with your child’s doctors and nurses, as well as teachers and school counselors. They can help you tap local and regional agencies and organizations with expertise and experience. The same holds true when seeking to strengthen your marriage or relationship. Don’t be afraid to ask for help. It’s not a sign of weakness. It takes wisdom and strength to recognize when you are overwhelmed or at a loss for answers.
Dushka and I welcomed counseling from our church pastor, family members, and members of our church. On the financial side, we received wonderful support from many who held fundraisers or contributed money to help Nick. I’ve mentioned that Dushka’s family created a scholarship fund for Nick, and the Lions Club was incredibly helpful in providing wheelchairs and prosthetics. Another great source of assistance was Blue Nurses, a service provided by the Blue Care organization in Australia, which provided volunteer caregivers for Nick when he was studying at the university. He has since done fundraising for their organization to show his gratitude.
Family members also supported us by baby-sitting or helping pick up our kids from school so we could take vacations or steal some time together. We were an average middle-class working couple without many financial resources, so we leaned heavily on family, friends, and others.
Back then we didn’t know the term respite care, but we certainly knew the concept. It’s temporary-relief care service for families of children or adults with special needs. It can range from a few hours of care to overnight or extended periods. You can get respite care from family members, friends, or professional care providers so you and your spouse can get a break, whether it’s a movie, a class, a date night, or a vacation.
Dushka and I made the decision not to use full-time caregivers at home because we wanted to have a more normal family life and we wanted Nick to do as much as possible for himself. We all pitched in to help when he needed us. We found that working together brought us closer as a family, and even today with the entire family relocated in California, we feel the same way.
6. Lighten the Load
The Bible teaches us to give thanks in all circumstances. Giving thanks in good times and for beautiful gifts is not that hard. We do it with cheer and excitement, and so it should be. Children are among the greatest gifts, and that includes those who are perfectly imperfect. Parents of these special kids often tell me they’ve learned so much about courage, perseverance, and love from them. A relationship that has been stressed and endangered can benefit greatly when we remember that our spouses and our children are blessings in our lives.
The Bible tells us that Jesus was struck by the lack of gratitude shown when only one of ten lepers He had cured returned to thank Him. The Son of God knew that gratitude itself c
an be a healing force. Husbands and wives often forget to apply gratitude to each other. They get caught up in the daily scramble and the many responsibilities of raising a family and forget to thank the person who is always there for them, working alongside them, comforting them, and supporting them.
I’m a work in progress on this front. I’ve tried to surprise Dushka with gifts, but I’m not the best at picking them out. I usually ask sales clerks and other women for advice and suggestions. Sometimes I even find something she likes! (Though she never complains when I’ve failed miserably.) I also try to show my gratitude for her with surprise dinners. Sometimes I cook them, and she actually appears to enjoy them, which I’m very grateful for in return.
Dushka once surprised me by planning a special vacation. She spent weeks arranging it, even secretly getting my boss to give me the time off and flying in my sister to watch the kids. I still didn’t know of the plan when I went to the airport to pick up my sister and her son, who I thought were just visiting us for a few days. My sister feared that I’d be so overwhelmed when the trip was announced that I might have a heart attack, so she kept asking me if I felt okay on our trip home from the airport.
We began to prepare lunch at home for our visitors when the kids spotted a white stretch limousine coming up the street. We all watched it approach, thinking the driver was lost or looking for a neighbor. When the car parked in front of our house, I was sure the driver had made a mistake. I opened the door, and he said, “I’m looking for Boris!”
Before I could say he must be mistaken, Dushka raced up and revealed the surprise. “We’re going to Vanuatu!” This was my dream destination—a South Pacific nation made up of eighty-three beautiful islands featuring tropical rain forests, waterfalls, mountains, and beautiful beaches. Friends of mine had gone there and described it to me, and I’d always wanted to take Dushka so we could see it for ourselves.
Dushka, who does the family financing and balances the checkbook, had already arranged payment for the hotel, not to mention our airline tickets. She simply handed me my passport and my bag already packed. She then revealed that my sister Radmila had come to watch our kids. All I could do was beam with pleasure and thank her profusely—for the rest of our lives. I actually planned a similar surprise trip for her a few years later to an island getaway, so I expressed my gratitude that way too.
These were not extravagant trips, and smaller expressions of gratitude and love are always welcome too. It’s the thought that counts, and living with an attitude of gratitude toward each other every day can help a couple overcome many challenges.
Humor is another healing force for married couples. Our kids sometimes tease me about being too serious, and I guess that is often the perception of the father with a lot of responsibilities, but I’ve relaxed more over the years as they’ve grown.
Laughter and humor are important in any relationship. Dushka and I were able to retain our sense of humor, and we found that laughter is a wonderful way to relieve the stress and tensions. The Bible tells us to make a joyful noise and to give thanks in all circumstances, and I think that’s great marital advice.
Sometimes we didn’t know whether to laugh or to cry when difficulties arose, but laughter was usually a more helpful response. It helped that Nick has a great sense of humor too, and his ability to laugh at life draws people to him and helps break down barriers and misconceptions. It’s a wonderful gift.
Gratitude is another terrific stress reliever that can be used to reframe almost any situation, casting it in a new light and improving your disposition. Therapists say that the parents of disabled and special-needs kids benefit from focusing on their children’s strengths and being grateful for what they can accomplish rather than always being concerned about their disabilities.
Nick often tells the story of a family friend with Down syndrome who told him that it’s great to have his disability “because it means you love everybody.” Now that is an attitude of gratitude. Such an upbeat and positive approach can also be a wonderful balm for couples who have parenting challenges. Dushka and I developed the habit of looking for the upside and focusing on the good as a way to stay positive in our relationship. For example, it was true that there were additional expenses in raising a child with no limbs, but we softened that blow by noting that we never had to buy Nick a car or shoes or gloves while raising him.
Nick has been known to borrow those lines in his speeches and books, and he loves to play pranks like riding around on the airport baggage carousel and talking to people waiting for their luggage. He also makes jokes while expressing gratitude for the usefulness of “my little chicken leg,” which is the nickname Michelle gave his left foot when she was a child.
Proverbs tells us, “A cheerful heart is good medicine, but a crushed spirit dries up the bones.” The healing power of laughter and gratitude has been well documented in scientific studies; both laughter and gratitude have the ability to trigger beneficial stress-relieving chemicals in the brain. I encourage all couples to maintain a sense of humor even in the hard times and to always give thanks for the blessings life brings.
• One of the most harmful things parents of a disabled child can do is to neglect their marriage. Your child needs a solid family foundation of support and love—and you need each other to be sources of strength.
• I’ve advised you to develop team approaches for your child’s medical care and for the school years, but no team is more important than the parental team whose members shoulder responsibilities and offer encouragement and support to each other.
• As traditional as Dushka and I are in our approach to marriage and parenting, we realized early on that we had to be flexible and adaptable in our roles, whether that meant me cooking and cleaning or my wife serving as the disciplinarian and in-house accountant.
• Frustrations and tensions can easily escalate in a household with a special-needs child, so open communication and expressed feelings are vitally important.
• We found it helpful from time to time to go off together and remember why we married in the first place.
• There is no shame in making the most of available resources, including family, friends, ministers, therapists, psychologists, support groups, and government agencies. If you need help to keep your marriage strong, ask for it!
• Laughing at yourselves and life’s craziness is a great way to lighten the load. We recommend fun family times, fun friends, and funny movies in large doses.
Dushka and I did all we could to prepare Nick for an independent life. We wanted him to be successful, happy, and fulfilled. There was one concern about his future. Nick wanted to marry and have a family, but we weren’t sure he’d ever fulfill that dream.
Then, just as Nick was approaching his twenty-eighth birthday, he contacted us on Skype from his home in California. He seemed excited and in a very good mood.
“I have something I want to tell you,” he said.
His nervous smile tipped me off, and I blurted out, “You’ve met a girl!”
Nick’s eyes widened and his jaw dropped. “How did you know?”
He thought I’d been reading his mind or spying on him from across the world. I told him it was a father’s intuition.
“Well, you’re right,” he said. “She’s wonderful!”
He told us he’d met this Christian girl through a mutual friend in Dallas. Nick then held up a photograph of a young woman with such exotic beauty I couldn’t help but blurt out again, “What is her nationality?”
Nick explained that her mother is of Mexican heritage and her father was Japanese.
“Her name is Kanae Miyahara, and while her features are Asian, she grew up in Mexico and speaks Spanish,” Nick explained.
Her parents had met when they both worked for a Japanese-owned horticulture company in Mexico. Kanae and her siblings were raised in central Mexico. Kanae had moved to Dallas as a teenager. She was a nursing student and a strong Christian.
Nick told us this a
nd then waited for my usual response whenever he told me about a new girl in his life. In the past, I had not been supportive or enthusiastic. This was mostly because my instinct was always to protect Nick from having his heart broken. Privately I had always harbored doubts about his marriage prospects. I knew it would take a very special woman to marry a man without limbs.
“Well, Dad, I know you must have something negative to say,” Nick said, prodding me.
This time I surprised him by saying, “She’s beautiful, and I don’t have a single negative thing to say about her.”
Nick took that as a good sign.
I later told Dushka that my only concern was that this young woman seemed almost too good to be true. Over time, we came to realize that even though Kanae had a very different background from us, there were two major things we had in common. She loved Nick unconditionally, and she believed her faith could help them overcome any obstacles.
FULL CIRCLE
We would later learn that Kanae did not grow up in a Christian household. After a difficult childhood, she found her way and became a Christian when she was fifteen years old. Even though Dushka and I came from strong Christian families and had been Christians all our lives, we came to be inspired by the depth of Kanae’s faith. Her love for Nick was equally inspiring, and seeing them come together as a couple, then as husband and wife, and now as a mother and father has brought us full circle in our own journey of faith with Nick.
I know many parents with disabled children, and nearly all of them seem to have struggled early on with questions of faith. The most common is “How could a loving God so cruelly burden one of His children?”
It may help ease your mind to understand that having questions about God and His intentions is a natural part of being a Christian living in a world that includes sin and pain as well as grace and joy. Parents of disabled children who question God in their prayers may feel guilty for doing so, but remember that Jesus did the same in His darkest hour on the cross when He looked to heaven and said, “My God, my God, why have you forsaken me?”
Raising the Perfectly Imperfect Child Page 17