BONDS OF LOVE
Perspective is an important asset for anyone dealing with hardship and challenges. Over the years, we would be humbled by and impressed with the positive and loving nature of parents whose children had disabilities far greater than our son’s. We’ve learned that most parents with special-needs children find the strength and resources they need.
Many of them feel overwhelmed, exhausted, defeated, fearful, and battered by the unrelenting weight of their responsibilities. Yet their friends and family and all who know them describe them as heroic. Most rise to the occasion. They may have moments of weakness and doubt, but their love for their kids helps them find a way even when there appears to be no way.
In times of personal crisis we tend to think that no one could possibly understand what we are experiencing. Yet nearly every stage of our response to Nick’s disabilities was typical for parents dealing with the unexpected challenge of a disabled or special-needs child. They go through grief and disbelief before reaching acceptance. Once that happens, true bonding begins. And when those bonds of love form, the stress diminishes.
Once Dushka and I let go of the child we had expected, and accepted the child God brought to us, we shifted into a more positive outlook. Each day that we were able to hold Nick and see him smile and respond to us served as a steppingstone toward building our family and our lives together.
Our emergence from darkness toward the light actually began as soon as we made the decision to bring Nick home. We immediately felt more in control of our lives. We had come to terms with Nick’s disabilities, and once we did that, our mission was to nurture him and make the most of his capabilities.
We had to accept God’s will and focus on doing our best, taking each day as it came. When we did that, we found it easier to stop focusing on Nick’s “problems” and instead to look for solutions that would give him—and us—the most normal lives we could create. As simple as it sounds, our lives settled down considerably when we stopped worrying about the future, which we could not control, and instead began handling things we could control on a day-to-day basis.
A CHILD ALMOST LIKE ANY OTHER
While Nick is unique physically, he was still in most ways a normal baby. As first-time parents—and as a couple who’d been on their own for five years—we had all the standard adjustments to make, and then a few more. Dushka knew more than I did about caring for infants. I was a rookie at the typical tasks of bottle feeding and diapering. She had to teach me how to take care of Nick in the basic ways, and then we both had to learn about caring for his special needs as a child without limbs.
One early adjustment we made was in the clothing department. Dushka and both of our mothers became custom tailors, staging sewing sessions in which they stitched up the arm and leg holes in all the baby clothes we’d purchased for Nick before he was born. They did have to leave one opening in the legs for his larger foot. By the time they were done, Nick’s onesies resembled little straitjackets—something many parents might wish for at times.
Baby Nick seemed to take the confining clothes as a challenge. As he became more active and began crawling and squirming about, our son proved to be an infant Houdini. I don’t know how he did it, other than by wriggling and rubbing and squirming, but we had a hard time keeping clothes on him.
Little Nick’s eagerness to shed clothing would become a habitual behavior that follows him to this day. It took some time for us to realize that this was a response to the fact that his limbless body had considerably less surface area for venting body heat. Without arms or legs, he easily overheats. Even today, as soon as Nick is out of the public eye, he tends to shed his shirt to stay as cool as possible.
After we’d had a couple more kids, Dushka and I realized that in some ways Nick had been easier to care for than his brother and sister in their first few months. We didn’t have to worry about Nick scratching himself with his fingernails, kicking off his blankets, or waking himself up by jerking his arms and legs while dreaming.
Dushka and I had a long-running series of jokes about the fact that we could save a lot of money and time spent redressing him by just letting him go naked. Later we’d note that we saved hundreds in expenditures for baby shoes, socks, and gloves. Our other kids, Aaron and Michelle, were a lot more expensive when it came to clothing, a fact Nick liked to bring up to tease them as they grew older.
SLEEP DEPRIVED
There was another common parenting issue we did not have to worry about with baby Nick. Other parents complained that they often woke up in the middle of the night and checked on their silent infants because they worried they weren’t sleeping. We never had to check on Nick to see if he was awake because it seemed as though he never slept—and neither did we.
We needed no baby monitor because when Nick was not sleeping, he was crying. This wasn’t due to any special issues. He developed the very common, and extremely frustrating, childhood ailment of colic. Marked by crying, restlessness, and general irritability, this isn’t considered a serious illness, unless of course you enjoy sleeping or find sleep essential to your sanity.
As many parents know all too well, colicky babies are relentless criers. They can wail on and on for hours. No one really appears to understand what causes colic. It usually strikes between the ages of two weeks and four months. In most cases, it doesn’t last more than a couple of weeks. I think Nick had it for several years—okay, maybe it was just a month or so. It’s tough to measure time when you don’t sleep.
Nick would wake up and begin howling and caterwauling until he collapsed from exhaustion. Dushka and I would pick him up during his crying spells and try to comfort him. Sometimes he’d stop crying for a minute or two, and then, like a relentless car alarm that won’t shut off, he’d set off screeching again.
I’ve never known of a sure cure for colic, but some parents claim that if the child is on baby formula, it can be helpful to change to soy milk. I’ve known parents who put their babies in car seats placed on top of operating clothes dryers. The vibrations apparently help put them to sleep. Other parents say they’ve put their colicky kids in the car and driven them around until they go to sleep. Dushka and I did this many times.
As Nick noted in one of his own books, we have a friend who put on noise-dampening headphones and pushed his colicky baby in a stroller around the dining room table until the child stopped crying and fell asleep. That father claimed he made more laps than an Indianapolis 500 driver on some nights.
Dushka and I responded to Nick’s colic and his constant crying by parenting in shifts. I took the night shift because I still had a day job. Dushka had the day shift. We were ships passing in the night—two very slow-moving ships with scant wind in our sails.
In my sleep-deprived, slightly addled state of mind during those colicky nights, I found myself wondering if Nick’s lack of limbs was somehow contributing to the severity of his colic. I wasn’t thinking very clearly, obviously. I also worried that maybe he was crying because he was hungry. He didn’t seem to be eating much. I didn’t know what to do to calm him. I’d offer him food and hold him, but that raised another issue.
Other parents cautioned that we shouldn’t pick up our child every time he cried because he’d come to expect that. It’s okay to hold and cuddle your baby, they said, but in most cases you should allow him to cry until he goes to sleep. For a first-time parent with a disabled child, that’s not an easy thing to do. My mind tended to create all sorts of worst-case scenarios when I heard my child wailing all the time, even if I knew the colic was to blame.
After a few weeks of torment, Dushka finally took Nick to the pediatrician and explained that no one in our house was sleeping because of our baby’s crying jags. The doctor considered this a pretty severe case of colic so he gave us some drops to add to Nick’s baby formula. I don’t know what medicine or herb it was, but I considered it a miracle drug at the time because the drops calmed him so we all could make it through the night.
For
the record, I did not derive any satisfaction or feelings of payback or revenge when—many years later—Nick’s own first child developed colic and kept him awake for many nights. I’m not that kind of father or grandfather. Maybe I did remind my son of all the sleepless nights he gave us, but I did it with a smile.
I will admit that despite all his crying, there was one thing I enjoyed about Nick’s colicky days. For the first time since his birth, I had something normal to complain about in talks with other parents. It was fantastic!
Our friends and family members with children could offer only their sympathies about the challenges posed by Nick’s disabilities, but they were more than willing to share their own woes on this subject.
“You’re not getting any sleep? Welcome to parenthood!” they’d say.
EMBRACING NORMALCY
We all seek normalcy. We all want to share common experiences. It’s part of our need to belong and to be part of something greater than ourselves. That’s one of the reasons having a disabled child threw us off so much initially. We lost our bearings because we had expectations of a normal child and a normal parenting experience. Having a child with no limbs placed us outside the realm of our shared experiences.
Most of us are wary or fearful of challenging experiences unless we’re seeking them. When we are forced into situations that are outside our comfort zone, we tend to feel stressed and beleaguered. In those situations, our instinct is to try to regain a sense of normalcy.
For parents with disabled newborns, this often means redefining what is normal for their family by establishing new comfort zones. Dushka and I expressed this when we said things like “We just want to get our lives back” or “We want to be a normal family again.”
We often wondered at first if we would ever return to a comfortable existence. Yet the more time we spent with our son, the more we embraced our new life. It helped us tremendously to surround ourselves with other members of our family who were ready by then to welcome Nick into our rather large fold.
Dushka had nine kids in her family. I grew up with five siblings. Then there were cousins and other extended family members, along with many members of our church who were like family to us. We had quite a substantial community of supporters, but they’d been careful and thoughtful, giving us time to adjust. Although they were eager to offer assistance, they held back until we were ready to ask for it.
This may sound a little strange, but our lives had changed so dramatically that we were a bit surprised to discover that our circle of family and friends was still intact. The environment hadn’t changed as much as we had feared. They were still there for us. They were eager to encourage us. Dushka and I felt like we were stepping into a warm and inviting home after weeks of wandering lost in a cold and hostile landscape.
I had some initial reticence about socializing again because I thought no one would be able to understand what we’d been through. I worried that we wouldn’t know what to say to each other or that Nick’s unusual body would make them unwilling to hold him or interact with him. I was heartened, then, to find that most relatives and friends were empathetic and quite eager to welcome Nick. To see the important people in our lives coddle and hug him was comforting and encouraging.
Once Nick was over the colic, his true demeanor emerged, and everyone was charmed by his sweet-natured, smiling, and determined attitude. He was actually quite adorable. Even back then, I observed our infant son win over complete strangers with his abundant charms. For those who spent even a brief time with him, Nick’s lack of limbs didn’t define him as much as his exuberant and engaging personality did. He loved to be held and coddled and was quite verbal and expressive.
Nick was born into a large brood of about thirty cousins, most of them rowdy males, and they proved to be a blessing in many ways as they grew up together. From infancy through childhood and to this day, Nick’s boisterous cousins have accepted him, loved him, relentlessly teased him, tossed him about (to my frequent terror), and generally treated him as one of the gang.
Each of our family members was positive and encouraging and relieved that we were home with our son. All of them made it clear they were willing to step up and give support whenever and however we needed it.
Returning to the embrace of our relatives and friends helped us heal and come together as a family. Dushka and I could have handled basic things like feeding, bathing, and clothing our son after taking him home. But having others in our lives who loved our son provided the support we needed to heal emotionally.
ON THE OTHER SIDE OF GRIEF
As family and friends bonded with Nick, our own love and acceptance of him deepened. Late at night or in the early mornings when I had time to reflect, I wished we could have reached this stage of acceptance sooner and without so much pain. It would have been helpful to understand that we would eventually find strength so that we could settle into a new normal, a place beyond sorrow that was less stressful and more like the life we had expected.
Pregnancy is a vulnerable time for women emotionally, and it’s important to stay positive and hopeful. I suppose social workers, therapists, and physicians don’t want to alarm or burden expectant parents with stressful thoughts, and that’s understandable. There is probably not ever a good time to counsel expectant parents on the possibilities of delivering a disabled child. Still, I did find myself wishing that we had been prepared in some way or that we’d had someone who could pull back the black curtain and show us that more hopeful, more normal days awaited us on the other side.
I don’t want to give the impression that as soon as we took Nick home we were suddenly free of anxiety about his future. We still had sleepless nights even after his colic was gone. Yet during this period, we were able to breathe a little easier and feel more like typical parents.
After we took Nick home and worked through his bout with colic, I felt the stirrings of a greater confidence. Like many parents in that situation, I learned to take the challenges as they came and to rely on God’s strength whenever I felt weak. We just don’t know our full capacity for overcoming and persevering until we are fully challenged and everything is on the line. Then, and only then, do we discover what lies within us.
When Dushka and I accepted the challenge of raising Nick, we did it with humility and prayers, which was the wisest thing we could do because we definitely felt in over our heads. We are all vulnerable, and so we should all remain humble and faithful. This was the lesson also in the Bible story of the apostle Peter. He considered himself the most loyal disciple of Jesus. When Jesus was under threat of arrest and persecution, Peter boasted that when others denied and abandoned Jesus, he would stand and fight to the death for Him.
Jesus told Peter that before the night was over, Peter would deny Him three times. Peter insisted that this would not happen, but it did, just as Jesus predicted. I feel that both Dushka and I came apart when the reality of life hit us with the birth of a limbless child. We had our great expectations all set. We were ready for that “perfect” newborn child. We felt confident, like Peter, that we were strong and unwavering in our faith. And then when Nick arrived, we were devastated and all our joy was gone because he had no limbs. Our faith was shaken. Our lives were thrown into turmoil.
I’m thankful I’d admitted to my friend days before that I felt unequal to the task of raising a disabled child. Still, in many ways I certainly felt like Peter because I was so much weaker than I’d expected. I was a church elder who had preached and taught others to trust God and His promises. There’s definitely an expectation that church leaders should not only preach but also live and demonstrate these virtues and qualities. Yet people forget that church leaders are human and that they experience the same difficulties as everyone else. I came to see that part of God’s plan was to keep me aware of how much I need Him in my life.
God promises His support in the Bible when He says He will never leave us or forsake us. This is the lesson I had to learn: rely on God and His power. Dushka a
nd I leaned on each other, on our faith, and on our family, as well as our entire community of supportive friends. We still had fears for Nick’s future, but we chose to focus on the daily process of caring and providing for him.
There was one other powerful source of strength who surprised us nearly every day in our journey. Many parents of special-needs children discover, as we did, that it is our children themselves who become our greatest inspirations. In the next chapter, I reveal how our son became our hero.
• Resist the urge to isolate yourself.
• Accept the support of family and friends.
• As quickly as possible move from a reactive position to being proactive.
• Establish new daily routines.
• Return to doing “normal things,” including work, socializing, and recreation.
• Find support groups, online forums, and other sources of information.
Nick was only eighteen months old when we traveled to the United States to attend a summer church camp in Virginia. One hot and sticky night near the end of the week, Dushka and I were taking Nick back to our dorm room from dinner when a guy I’d never met walked up to us.
“When are you going to take off your mask?” he said.
“What do you mean?” I replied.
He pointed a finger at Nick, who was wearing just a diaper and no shirt because of the heat.
“Why do you act like everything is fine?”
Apparently he was mortified that our son wasn’t covered up. He seemed to think we should conceal Nick’s body as if we were ashamed of him.
Raising the Perfectly Imperfect Child Page 5