Raising the Perfectly Imperfect Child Read online

  “Is the baby okay?” she asked.

  I still hear her trembling voice in my dreams. The question was met with silence. The doctor and nursing staff were huddled around our child in a corner of the room. Dushka asked again, her tone more urgent. Again there was no response.

  My mind was frantically trying to process what I thought I’d seen during the delivery. It had happened so quickly. I questioned whether I’d really seen a shoulder with no arm. When the medical team refused to respond to Dushka, I felt queasy and clutched my stomach. A staff member observed this and escorted me outside without a word.

  As I left the delivery room, I heard a strange word uttered by one of the nurses: phocomelia. I had no idea what it meant, but it terrified me. I sat down on a chair in the courtyard with my hands covering my face. I didn’t know what was going on, but I could sense something was terribly wrong.

  It seemed like a long time before the pediatrician came out. He told me that Dushka had been sedated and was resting.

  “I need to talk to you about your baby,” he said.

  I interrupted his next words, saying, “He’s got no arm.”

  “Your child has no arms or legs,” the doctor said.

  “What? No arms and no legs at all?”

  He nodded grimly to affirm. Later he explained that phocomelia is the medical term for missing or severely malformed limbs. I’ve never been punched hard in the head, but I imagine the jolt to your brain would be similar to how I felt in that moment. My first thought was to get to Dushka before anyone else told her. I rose, and the pediatrician put a comforting hand on my shoulder as we returned to the birthing suite. My brain was racing, yet my body felt numb, my bones hollow, and my veins empty of blood.

  I tried to think of how I could break this stunning news to my wife, but when I stepped into the room, the sound of her weeping made it clear that someone had already told her. I was not happy about that. I wanted to be there to support and comfort her when she learned. It was too late. I leaned down and held her, caressing her back and shoulders, trying to absorb her pain and ease her anguish. Her body convulsed with sobs, and I soon joined her.

  Dushka was still groggy from her long labor and the sedation; after a few minutes she went silent, and I realized she was asleep. I left her, hoping she would rest and regain strength before awakening to the difficult decisions that awaited us.

  While Dushka slept, I went to the nursery and observed my son up close for the first time. He was among a group of newborns wrapped in their blankets. He was sleeping and looked very cute, a typically adorable newborn, so innocent and so unaware there was anything at all different about him.

  A nurse brought Nick to me, and I held him for the first time. I was surprised that he felt like such a substantial child, very solid and strong. He weighed about six pounds, and his sturdiness surprised and comforted me. He seemed like a normal, lovable child.

  Holding him stirred up conflicting emotions. I ached to love him. I could sense a connection growing, yet I had so many fears and doubts: Am I strong enough to raise such a child? What sort of life can we give him? Will he need more than we can provide?

  The nurse offered to help me remove the blanket around Nick. I wasn’t sure if I was ready to see his body, but I agreed. As you might imagine, I was overwhelmed to see my son’s sweet baby face and then his tiny trunk bereft of arms or legs. Oddly enough, his torso seemed quite streamlined and even beautifully formed because the arm and leg sockets were covered in smooth, soft flesh.

  The most striking differences on further inspection were the rudimentary “feet” attached to his little body. On his right side, there was what appeared to be a small, undeveloped foot. A more fully formed foot, with two distinct toes seemingly fused together, was attached to the bottom left side of his torso. The smaller foot was immobile and seemed more like a growth than an appendage. The larger left foot appeared to be more functional.

  In all other ways, Nick had the sturdy body of a normal boy, as well as a cherubic face any parent would want to kiss and hold. I felt grateful for his lack of awareness, his blissful innocence. I wanted to delay for as long as possible the suffering I feared awaited this child. I placed him back in his hospital crib and walked out into the uncertain future of my family. It seemed like an alternate reality where nothing would ever be normal again.

  Wave after wave of overpowering sadness hit me on the drive home. I grieved not for the son who was born but for the son we had expected. I feared that this child would endure a cruel lifetime of suffering. My disbelief and despair flashed to anger. Why would You do this to us, God? Why?

  Mine was not the response of a superparent or superman. I did not immediately surrender my feelings to God like the Bible’s Job, who after losing all his children in a single day calmly said, “The LORD gave and the LORD has taken away.”

  My response was that of an imperfect, ordinary man, a heartbroken husband and father who wondered if he was somehow responsible for this tragedy, for this incomplete child. Was this a punishment for something I’d done? Many other parents of disabled children have told me they experienced similar doubts, fears, and anger early on.

  I worry more about those who don’t grieve than about those who do. Professional therapists say we shouldn’t stifle our feelings. We should allow them to run their course so that powerful emotions are vented and hopefully pass. This process can be unpredictable, and the patterns vary greatly. Grief is part of the human experience, part of every life, and, I’m sorry to say, part of the journey when expectations for a perfect, healthy child are not met.

  The Bible focuses on Job’s strength, but I think it likely that he had his moments of crippling weakness as well. All parents want their children to be whole and to have unlimited, hopeful futures. It is quite natural to think that a disabled child will face more difficulties and suffering than others.

  We should not be ashamed of expressing our sorrow and allowing our tears to flow. I say this especially for other fathers. Men have this notion that we are tough cookies, that we must shoulder all burdens without complaint or lament. We are socialized not to cry, because emotional displays are seen as a sign of weakness. If we can love, we can hurt. Women and mothers have no monopoly on emotions. Men bond with their children too. They have dreams and expectations for them, just as mothers do. We can be strong and still express our fears and hurt, just as the Bible reveals Jesus often did. There is no shame in that. We all need time to absorb, to adapt, and to adjust.

  EXPECTATIONS FOILED

  At home I walked into an eerie stillness, an empty house gaily decorated for the anticipated arrival of our firstborn. The baby’s room still awaited our son with its cradle and inviting blankets. I recalled feeling concerned when I had assembled the baby bed because I thought the side rails might not be high enough once the baby had the strength to raise himself up. Now all I could visualize was my son lying in bed for the rest of his life, unable to stand, walk, or even crawl. I broke down again, sobbing until exhaustion mercifully plunged me into a troubled sleep.

  Morning brought no relief. My body ached from the inside out. I mourned the perfect child we had expected. I grieved for the imperfect child we’d brought into the world. I felt inadequate and incapable of caring for such a child. I felt disconnected from God, who had always sustained me but now seemed to have abandoned me. I did not look forward to returning to the hospital. I dreaded seeing my wife. How could I console Dushka when I felt so lost? How could I face this innocent child, my son, who needed more than I felt capable of providing?

  At the hospital I found Dushka awake and awash in tears. I asked her if she’d seen the baby. She could only shake her head.

  “Do you want me to bring him to you?”

  Another no.

  I did my best to console her, staying until she fell asleep, and then I went to the nursery. Again our son was bundled alongside the other babies. He looked quite cute and happy. Looking at his handsome little face, I couldn’t
help but think, What kind of life can this child have without limbs? He can’t walk, dress himself, feed himself. What will become of him?

  Again anger and remorse welled up within me. Why, God? Why did You allow this to happen? It would be better for him not to live than to be alive this way. Why don’t You take him away and spare him all the pain and suffering?

  I went back to my wife. She had awakened.

  She asked me if I’d seen Nick.

  “Yes,” I replied. “He’s a beautiful baby.”

  She looked away, her face contorting with anguish.

  “Do you want me to bring him to you now?”

  She shook her head once again and sobbed into her blankets. I had no words to lighten her burden. Our lives had been cut adrift from the reality we’d known and expected.

  We were not noble or admirable parents in those few days after Nick’s birth. We’ve told him that, and I think he understands. I certainly hope so.

  ALL TOO HUMAN

  Even after we’d moved beyond the initial shock, we had to deal with serious doubts about our ability to provide for and care for Nick. One of the factors that worked in our favor during this trying time was the fact that Dushka and I had been married already for five years. We’d waited to start a family while she completed her nursing studies, and then she received additional training as a midwife. I had worked as a clerk and, later, a production planner. We’d had time to travel a little and to save for our first home. Our relationship was well grounded. We were spouses and friends, and we were able to talk most things through to come to an agreement.

  Our bond would be tested time and again over the years—as most marriages are. The first major tests came after Nick’s birth. Looking back, I believe that Dushka went through postpartum depression, which seemed to compound and extend her initial grief. Every new mother is exhausted after delivering a baby, and most suffer to some degree from mood swings and the “baby blues” brought on by hormonal changes after childbirth. Postpartum depression is a longer-lasting version of this and considered a fairly normal complication. In Dushka’s case, it compounded her sorrow and inhibited her ability to come to terms with Nick’s lack of limbs.

  My loving, caring wife could not cope initially, and she refused to hold Nick or nurse him. Anxiety and fear overcame her. She cried for hours on end, saying, “This can’t be real; it has to be a bad dream. I cannot handle this.”

  Dushka needed time and space to process her emotions. We all handle stress in our own ways. There are common stages of grief—often identified as denial, anger, bargaining, depression, and acceptance—but they can range greatly in intensity and duration. Later I read that when parents learn of a child’s illness or disability, they often experience grief in unusual ways. Some go through certain cycles repeatedly or for extended periods. When that happens, they may require therapy.

  EMOTIONAL TRAUMA

  Recognizing that we are each affected in unique ways can be helpful and reassuring. Spouses need to support each other. Passing judgment isn’t helpful. You may think you’d handle the situation or the emotions better, but most people have no grasp of the torment.

  During those first few days after Nick’s birth, Dushka was overcome in ways that often surprised me because I couldn’t fully grasp the depth and breadth of her suffering. On one occasion when I entered her room and found her crying, she whispered, “Don’t I deserve flowers like other new mothers?”

  Stunned, I responded, “Yes, of course you do! I’m so sorry!”

  In all the emotional turmoil, I’d neglected to bring her the traditional gift. I walked out and went down to the hospital flower shop and quickly made amends. Dushka also felt hurt because we hadn’t heard from many of our friends and extended family members. I knew they were still processing this unexpected, extraordinary event. Most of them did not know what to say, especially since we hadn’t been able to communicate with many of them. Slowly other flowers, gifts, and notes began to trickle in. Most of the comments were very kind and cautious, but my wife and I were often moved to tears as we read them.

  When I look back on those times—and when I talk to other parents with disabled children who’ve gone through similar mourning periods—I can see that Dushka and I did something that is very common. We isolated ourselves during those first days and weeks.

  There were several reasons for this. We were hurting and needed time just to be alone to get through the overwhelming emotional turmoil. We didn’t want to talk about it at first because that only seemed to make us feel worse. We had no easy words to share, and most of our friends were also uncertain of what to say to us.

  We were so caught up in our own feelings that we were blind to the pain of those who loved us. They were hurting too. I had to remind myself that my parents, in-laws, and other family members needed to express their feelings too. In our sorrow, we can lose the ability to empathize with those who are hurting alongside us and for us. We can also forget to be grateful to those who offer kindness and support.

  We had a lot to sort out before we could open the door to those who wanted to help us. I encourage other parents who go through these situations to seek help when they are ready for it, because we found that sharing our feelings eased the healing process.

  COMING TO TERMS

  Dushka is a loving person with strong maternal instincts, but she struggled with accepting Nick’s disabilities in those first weeks. I was surprised that after a day or two she still did not want to hold our son, but I came to understand that my wife was not herself.

  Seeing that she was distraught, the hospital’s social worker delicately laid out our options. She said that if we felt incapable of caring for Nick, we could put him up for adoption.

  Initially Dushka was more open to talking about that than I was. We both knew this was a decision we would have to live with for the rest of our days.

  I didn’t want to give away our son, but I was concerned for my wife. If she didn’t feel strong enough to care for Nick even with her nurse’s training, how could I demand that she do so? I couldn’t tell whether she was so overwrought because of grief, because she was experiencing postpartum depression, or if it was a combination of both.

  Normally the mother is released from the hospital after a couple of days and takes her baby home with her. We did not do that. Our nurses and the hospital’s social worker made arrangements for Dushka to stay longer than usual. They also set up a bed for me in her room so we could console each other and talk things through.

  The staff felt we needed time together. They talked to us but tried not to rush us to leave or to make hasty decisions. We spent several extra days in the hospital, resting and talking through our emotions, gradually entering into discussions about our next steps.

  We had no contingency plan in place, no plan B for a less than perfect baby. After Dushka had rested and gained strength over several days, she told me she was willing to see Nick and hold him. I wasn’t so sure she was ready. She still seemed on the edge emotionally. We talked about it, and I realized Dushka also was wracked with guilt. She blamed herself for Nick’s disabilities, even though she had done everything by the book during her pregnancy.

  At first it was difficult to ease her mind because neither of us had any explanation for Nick’s condition. We both had many questions. It would be a while before doctors suggested that Nick’s lack of limbs was due to a rare mutation in the genes critical to a child’s development in the womb.

  CRUEL ENCOUNTERS

  Parents of disabled children often remark that they have to develop thick skins. I had my first encounters with this cruel reality shortly after Nick was born. The first was with a person I’d always considered a friend and confidant. I’d often prayed alongside him and shared private thoughts and feelings. I thought he would be sympathetic after Nick was born. I was taken aback when he suggested that my son’s disabilities might be God’s way of punishing me for my sins.

  Honestly, the same thought had occurred t
o me, though I had no idea what terrible sins I might have committed to merit such a cruel punishment for my innocent child. My friend’s words cut deeply and left me reeling for several days. I felt betrayed by his harsh judgment.

  I searched my soul to determine if there could be any truth in what he said. We had several frank discussions, and he eventually apologized. I forgave him, and I think in his heart he was trying to be a caring friend all along. Still, he would not be the last person—some well intentioned, others simply clueless—to rock us with insensitive remarks about our son. This was another painful lesson we learned in those early days and one that other parents of special-needs children have experienced: even after the parents have accepted and looked beyond their child’s imperfections, it seems most others cannot.

  A day or so after Nick’s birth, I returned to the pediatric unit nursery to check on our son. I stood at the viewing window and once again found Nick all bundled up, looking like all the other newborns. As I watched, a couple of nurses returned a freshly bathed infant to a nearby cradle, and then they picked up Nick for his examination and bath. They cooed and smiled at him, and he turned on the charm. I know some people say newborns don’t really smile, but those people didn’t know our little Nick!

  For the first time in a couple of days, my heart warmed to our son, and I had a taste of fatherly pride. Then the nurses placed him on an examining table near the back of the room. As they unwrapped him from his swaddling cloth, their expressions changed dramatically. Their eyes went wide, and they put their hands over their mouths at the sight of my son’s tiny body.

  Once again my heart sank, and I had to walk away from the window. I kept walking all the way out of the hospital, tears streaming. I did not go back to the nursery that day.