You say that you figured out how to raise him. Did you find much support through your church where you were a leader?
Raising Nick was a trial and error process for us when it came to finding ways to overcome his lack of limbs. We would try wheelchairs, for example, until we found one that worked well for him. It was an evolutionary experience. One can never say for certain that "I've solved that problem," or "I figured it out," because children grow and change so your approaches must grow and change with them to raise a child successfully. We know that each child is different so applying the same methods we used may not work for everyone, but the principles we applied may help others. Support from family and church certainly helped Nick develop social skills and acceptance as he played with other children and was held and looked after by others, like during Sunday school, for example.
Where did you find spiritual encouragement during the early years of raising Nick? Were there particular Scriptures that helped you along?
We found encouragement from family and church prayer groups. Meeting together and sharing thoughts on God's healing power and His faithfulness in supplying all our needs based on the Word and biblical promises certainly helped. Scriptures like, "And my God will meet all your needs according to his glorious riches in Christ Jesus."(Phil. 4:19, NIV).
You say that in some ways it was easier to care for Nick than your other children. How could this be?
Aaron and Michelle were more expensive when it came to clothing. We saved a lot of money on baby shoes, socks and gloves, and we didn't have to worry about Nick scratching himself with fingernails, kicking off his blankets or waking himself up by jerking his arms and legs while dreaming.
You write in your book that: "Nick seemed incomplete at birth, but it was our perception that was flawed." What do you mean?
Absence of limbs is what we see as physically "incomplete" individual. Consequently, we tend to view such individuals as disadvantaged or less capable or limited in both ability and mobility. However, that is so only at a glance. When you spend time with individuals who have some limb deficiency and have a chance to see how they manage their everyday lives and how mobile and versatile they are, you are amazed and come to admire them as exceptional people. I've seen individuals with no arms cooking with feet and peeling potatoes, riding a horse…that's incredible! I certainly couldn't do those things without using my arms.
Did you discipline Nick as a young boy? If so, how?
Yes. Every child needs to have boundaries and learn respect and responsibility. These were done by providing guidance and instructing Nick what is acceptable or unacceptable in his behavior and language. He was expected to abide by these rules like everyone else in the family for the common good and well-being. Homework, for example, had to be done prior to playtime. If homework was not done, no playtime. Nick had the same allotted times for visitors and bedtime as the other kids. At times, a curfew was imposed because he did not follow the rules or exhibit the appropriate attitude. There were times when he was banned from his favorite play, pulled aside and talked to and even spanked when he used inappropriate or aggressive behavior and was disrespectful.
Did raising Nick put a strain on your marriage?
Raising any child is an added strain on relationships and marriages in particular. There's a demand to care and provide for the child 24/7, but a disabled child often requires ongoing care and not just in the initial few years. Feeding, clothing, cleaning and similar tasks are often done by parents at the early stages of the child's life. But with Nick, we had those responsibilities for a longer period. When children reach their late teens they typically become more independent in caring for themselves and getting around to activities and school. Nick needed more assistance and services. All these little factors add to the time required from parents to spend with their child and they can put stress on relationships. Therefore, sharing the load and finding a balance and equilibrium and crossing the traditional boundaries on duties is a must for the parents of a disabled child. Sharing the additional duties helps reduce the negative impact and stress on marriage. Taking care of your spouse's needs and being aware when there is stress or concerns is also vital to retaining strong bonds in a marriage.
You say you had to learn to "parent without borders." Please share an example of what this means.
This refers to the fact that we didn't follow many of the boundaries of traditional husband/wife roles or duties. Washing clothes and dishes, sweeping and mopping the floor, cooking a meal, changing diapers and similar everyday tasks were not just my wife's responsibility. Those were duties we shared. We both worked and Dushka was on shift work. Therefore, whoever was off in the morning prepared breakfast and helped the children get ready for school. Whoever was off in the afternoon picked up the children, provided dinner, helped them with homework and readied them for bed. Today this is much more common practice compared to the 50's and even the early 80's. Back when we were raising Nick the spousal roles were more traditionally followed with the wife being a housewife and the husband a breadwinner.
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