“My Daughter, Surgery, and Questioning God”

Document—Fall 2011

My Daughter, Surgery, and Questioning God

by Kim Wade

I’m not sure how I finally nodded off, but I knew the lack of sleep would eventually catch up with me. The knock at the door nudged me back to reality, and it took me a few seconds to remember where I was. My neck ached. I hated sleeping in a chair.

The nurse didn’t wait for me to respond to her knock. She walked into the room and reached for the light switch. Before she could flip the switch, I quietly but firmly said, “Please don’t turn on the light. You’ll wake her up.”

I could tell the nurse was annoyed. She gave me a pinched smile and squinted her eyes. “Well, I’ll see if I can do what I need to do in the dark.” She reached for the electronic thermometer in the front pocket of her scrubs.

“Do you have to check her temperature?” I whispered. “She just fell asleep about 20 minutes ago and the other nurse checked her temperature last time.”

The nurse looked up at the ceiling and sighed. I was really bothering her.

She looked over her shoulder at me. The pinched smile was back, and she was gripping the thermometer in her white-knuckled fist. “Dr. Loveless won’t be happy with me if I don’t get her vitals.”

I stood up and walked over to the bed and looked down at my daughter, Veronica. She looked peaceful despite the IV in her tiny hand, the blue wires attached to her chest, and the beeping machines surrounding the head of her bed. “Look at her—she’s worn out. Can you please come back later?” I tried to sound like the voice of reason.

The nurse looked at her clipboard. She tapped her foot as she read the monitors and compared the numbers to the ones the other nurse recorded an hour ago. She bit her lip. I felt like I was getting through to her.

“I’m supposed to record her vitals every hour,” she whispered. I noticed she was not smiling any more.

I knew it was better not to say anything at this point. I also knew that if she tried to take Veronica’s temperature, then I would reach out and block her. She was not going to wake her up.

She sighed again and looked at the monitors. I saw her jaw flex, and I could tell she was gritting her teeth. “I guess it won’t hurt if I come back in an hour since she seems to not be in any pain.”

I did my best to muster up a real smile and say, “Thank you so much for understanding.” I stood on guard by the bed until she was out the door.

I looked back down at Veronica and watched her chest slowly rise and lower with each breath. “You owe me,” I whispered.

I stood for another five minutes, watching her. The rhythm of my breathing began to match hers, and my heart the beat of the heart monitor. I could barely feel my fingers; they rested on the cold, metal bed rails. My eyelids slid down. I was about to fall asleep standing up.

It was almost 3 a.m. I longed to be a regular person asleep at home in my own bed. I wished I didn’t know this familiar feeling of sleeping in a chair beside my daughter’s hospital bed—all alone. I had not had a bed to sleep in for almost 24 hours, and I knew we still had at least one more night in the hospital.

The coffee machine down the hall was my new best friend. Unlike the last hospital we went to, this one was free. The thought of the warm Styrofoam cup in my hand was inviting, but I decided to sit back down and try to get a little sleep before the nurse came back. I wouldn’t be surprised if she brought backup next time—I had learned to expect it.

After I sat down in the stiff plastic chair, I thumbed through my backpack for a flashlight and something to read. I felt the familiar, smooth leather cover of my Bible, but I wasn’t in the mood to be reminded of God’s plan. I fumbled around until I found my unread copy of Vanity Fair. I wanted to numb my brain with celebrity interviews and gossip until I could sleep again.

Having a disabled child is one of the most heartbreaking and frustrating gifts God can give you. It has been almost 11 years since Veronica came into my life, and I am not sure I can remember what my life was like before her. I do, however, remember the day I found out that my little girl would be different.

The doctor looked down his pointed nose through his wire-rimmed bifocals and said, “There is something very wrong with your baby.” In that instant, my life changed completely.

Most pregnant women schedule their five-month ultrasound with excitement. It’s the appointment known as “the big one.” Mommy- and daddy-to-be finally lay eyes on their little bundle of joy and find out if it is a girl or boy. I could not wait for my first ultrasound. I called everyone close to me to let them know it was the big day. Even my husband at the time planned to leave work for a few hours and meet me at the appointment. The Army kept him busy and away from home, so I was excited that he had the chance to go with me. Up until this point, he had shown little interest in the pregnancy.

We arrived at the hospital on time, and we went into a narrow, white room for the ultrasound. The ultrasound technician moved the small, white sensor across my exposed rounded belly for almost an hour. Our casual conversation of “there’s the baby’s head” and “there’s the baby’s legs” slowly turned to an awkward silence. I got the feeling that something was wrong, but I was afraid to ask questions. Jim fidgeted with his cell phone the entire time. I wished he had stayed at work.

The technician finished taking measurements and printed out a few keepsake photos for us. She helped me wipe the jelly off my stomach and mentioned that we needed to speak with Dr. Newman before we left.

Jim said he needed to go to the bathroom. My stomach sank; he was notorious for disappearing for long periods of time. I would be alone with the doctor.

I sat waiting on a cold metal bench in the sterile hallway. I fixed my eyes on the small pictures of my baby, which I cradled in my hands. I did not notice the man standing in the open door calling my name. He raised his voice, startling me out of my daydream.

He appeared to be a seasoned physician with the physique of a basketball player. His wire-rimmed glasses were pushed to the tip of his nose in such an annoying fashion that I wanted to take my finger and slide them into place.

He looked like he was in a hurry and seemed to have better things to do than chitchat with me about my ultrasound results. “Where’s your husband?” he asked. I shrugged my shoulders and smiled. The doctor rolled his eyes. He sighed and looked down the hall and tapped his foot as if that would make Jim appear.

“I can just talk to you by myself,” I softly suggested. He looked at his watch again and then angrily motioned me into his office. I sank into the plush chair in front of his desk—I felt like I was in trouble with the principal.

“Mrs. Wade, I’m sorry to tell you this, but the ultrasound shows that there is something very wrong with your baby.”

I shook my head. “I don’t understand,” I whispered.

He continued speaking with the speed of a machine gun, making me want to take cover behind the desk.

I saw the door open to my right. Jim muttered the usual, “Uh, sorry I’m late. What did I miss?” I didn’t have the energy to be mad this time. I felt like I was floating in the air—I was numb to everything.

The doctor rolled his eyes at the sight of Jim and motioned him over to the empty chair beside me. Dr. Newman caught Jim up to speed and continued: “The baby’s legs are crossed at the hips in an unnatural position. The fingers are overlapping each other and the hands are pulled in tight to the body like this.” The doctor leaned back in his chair, crossed his extended legs, pulled his arms to his chest, and forced his clenched fists into an unnaturally twisted position. He even closed his eyes and dropped his head down. He looked like a deformed mummy. I was mortified at the thought that my baby looked like that.

Shut up! Shut up! Stop talking! My mind repeated these words over and over but my mouth was speechless. I needed to give my brain a moment to catch up. But Jim and the doctor continued talking, like I wasn’t in the room.

I just stared out the large picture window. I thought to myself, “This doctor must be important—he has a great view.”

We lived just south of Seattle and the weather outside was as gloomy as my soul. Small drops of water formed on the pane. It was too foggy to see Mount Rainier that day—another disappointment.

The rest of the conversation was a blur. I remembered he told us that the baby appeared to have a rare chromosomal defect—giving it a one-percent chance to live. “Your baby will probably die in the next few months,” the doctor said. “We can send you to a clinic in Seattle for an abortion if you choose to take that option.”

I had come to the hospital for a harmless ultrasound. How did I end up sitting in the doctor’s private office talking about nearby abortion clinics and dead babies? I wanted to believe that this was happening to someone else—anyone but me.

I didn’t remember the drive home from the hospital except that Jim drove, and he asked me to please stop crying. I shuffled into the house and went straight to my bedroom. I slipped under the covers, not bothering to even take off my shoes. I couldn’t open my eyes for fear I would see something that would remind me I was pregnant.

I felt like someone had yanked out the cord that powered my heart. My body was an empty shell. I wanted someone to drop me off the top of a building and shatter me into pieces. For the first time in my life, I did not want to live.

Except for the few hours I spent at the doctor’s office for my amniocentesis, I remained in bed with my head under the blankets for a week. I was in shock, thinking that the baby would die inside of me. I had wanted to be a mommy for so long, and I couldn’t believe that God would do this to me. I secretly promised God that I would remain faithful if he would save my baby.

While I was hidden under the layers of blankets on my bed, I heard the phone ring. I knew the doctor was calling to tell me the results of the amniocentesis test. I reached my shaky arm out of the covers and fumbled for the phone on the bedside table.

I pulled the receiver close to my ear and answered the phone without opening my eyes.

“Mrs. Wade?” I recognized Dr. Newman’s nasal voice. He sounded like he was in a hurry.

“Yes,” I replied.

“The test results are negative.”

I couldn’t remember if negative was good or bad. “What does that mean?”

“It means that the baby does not have a chromosomal defect.”

My eyes shot open and I sat up in the bed. I felt dizzy. “What do you mean?”

“Well, it just means that we can rule out a chromosomal abnormality,” he said.

I felt the warm glow of sunshine coming through my curtains for the first time in over a week. “But I don’t understand. You told me in your office last week that you thought the baby had a one-percent chance to live.”

The phone was silent for a moment, and I could hear him breathing on the other side. I wanted an apology. I wanted him to admit to me that he had been wrong about everything.

Instead he said, “I can tell you the sex of the baby if you want to know.”

I didn’t want to share this moment with this jerk, but my curiosity got the best of me. “Okay, what is it?”

He said, “It’s a girl.”

And several months later, we found out that the doctor did get one thing correct: Veronica was definitely a girl. I never allowed myself to forget the blessing that my baby did not die. The doctor’s initial prognosis of a deadly chromosomal defect was incorrect, but there was something wrong with her.

Veronica was born with a rare joint disorder called Arthrogryposis Multiplex Congenita, which means hooked or crooked joints. Luckily her case is mild compared to others. But it is still a daily struggle for her to get dressed, to feed herself, brush her hair, or anything else that requires her to use her arms and legs.

When Veronica was born, she couldn’t move her left arm, both hands were flat against the inside of her arms, her hips were dislocated, and she had very severe clubbed feet. She looked like a pretzel. I was told many times that she would never walk.

She now walks around quite well but with a pronounced limp. She tires easily and has to use her wheelchair for long distances. She has full use of both arms but her left arm is still very weak. Her hips were successfully reconstructed when she was about two years old. But her feet have been a constant source of pain for her.

This past April, the day finally came when I felt it was time to do the finishing touches on Veronica’s feet. Most people seem to believe that surgery is an easy fix for crooked limbs; it actually doesn’t work that way.

During Veronica’s ten years in this world, she has had nine major surgeries. That does not include the follow-up surgeries to remove the pins and plates holding her bones together.

She had her first surgery when she was six weeks old. The doctor cut the Achilles tendons on both sides to stretch out the backs of her feet. Apparently those tendons grow back just like a severed lizard’s tail—I had no idea.

Seattle Children’s Hospital was our home-away-from-home for her first year. They fixed her hands, started on her feet, and botched a hip surgery. I learned the hard way that just because a doctor is really good at fixing feet, that does not mean he can fix hips, too. He underestimated how shallow Veronica’s hip sockets were and tried to force the ball joints into her pelvis.

Then the Army moved us down to Georgia, and Scottish Rite Hospital in Atlanta became my new second home. They fixed her hips in a miracle surgery that even surprised the veteran surgeon performing the operation. The surgery took six hours and two blood transfusions, but her hips were finally in the right place—she was 2 ½ years old at the time.

After the hip surgery, Veronica started walking, which made me believe God really did have a special plan for us. We went back to Atlanta to have the same doctor fix her right foot. Unfortunately for Veronica, he was better with hips. But as my grandma would say, that’s how you learn the hard way. Surgery isn’t a quick fix—and it can be a total disaster.

The surgery did not fix anything. Veronica’s foot was not permanently damaged, but it really slowed her down for a while.

I never made this mistake again.

I did my homework. I cannot calculate the number of hours I spent in front of my computer screen, researching doctors, reading medical journals, and emailing other parents whose kids suffer like Veronica.

When it came time to fix her left hand, I was able to pull a few strings and use some important contacts back home to get Veronica into Texas Scottish Rite Hospital for Children in Dallas. She was seven years old, already a veteran of the surgical process.

The gamble paid off: she has full use of her left hand now.

*

We took a break from surgeries for the next three years. Veronica was doing great, and I wanted her to be a regular child for a while. Jim quit the Army after two combat tours to Iraq, and I thought this meant that we would finally have the chance to spend time together. I was wrong. It was the beginning of Jim’s spiral into depression and solitude.

After a late night of drinking, Jim wanted to talk. I sat frozen as he said, “I always thought the Army made me depressed, but I realized that being around you and children makes me sadder.” He left us in the spring of 2009 to return to Iraq as a private contractor. Divorce papers followed, and we rarely speak anymore.

Being alone was not a new feeling; I had organized most of the surgeries and doctor visits on my own. But now I did not have the option to call Jim and ask for help in making the right decisions for Veronica. So going back to Dallas in 2011 to get her right foot fixed was a choice I had to make on my own. If the surgery did not work, it would be my burden to carry.

There is one direct flight from Savannah to Dallas. The plane makes three trips per day going back and forth from Savannah to DFW. We know most of the flight attendants and pilots who make that trip. Of course it’s easy for them to remember us since we stick out in a crowd—a single mom loaded down with bags, wheelchair, and two children, one in a fresh cast.

Veronica’s last surgery in Dallas was in April—she was ten years old. It was time to fix her feet once and for all. But no matter how many times I read over the data and checked my facts, the surgeries never got easier. They seem to get harder—especially now that Veronica is getting older and becoming more aware of the fact that she is different.

And to be honest, as much as I try to be that person who accepts things because “that’s God’s plan,” I have been having a hard time accepting Veronica’s disability. I have never felt this way before.

The day Veronica was born was the first time I realized my need to believe in God. I accepted his plan for Veronica and me, and I chose to never doubt it.

Imagine having a child with a disfigured limb. You learn to live with the fact that it is, “Just the way God made her.” Then you find a doctor who can fix it. You make the appointment. You sit by the phone every day waiting for the call that tells you, “Sorry, but we can’t do the surgery.”

You never get that call. You realize that this surgery is meant to be. But you are taking a big risk. Your child’s foot may be “fixed,” but if she cannot bear weight on it then she will never walk again.

You buy airline tickets and plan for another miracle-surgery of a lifetime. Your close friends ask you, “So, what’s this surgery supposed to do?”

You give the standard answer you know they want to hear: “It’s supposed to make her foot flat so she can walk better—you know, help with her balance.”

But in the back of your mind, you know that there is no way to know what this surgery is going to do. It takes faith to believe that it will work and that you are making the right decisions for your child.

As we were sitting in the hospital in Dallas in April making the rounds for our pre-op blood work and X-rays, I looked at all the sick and crippled children surrounding us in the waiting room. And then it hit me—what is the purpose to all this pain and sickness?

I felt a little scared, because I had always feared retribution for questioning God. I had never once questioned God about Veronica’s disability—until then.

Sitting in the waiting room that day, I asked myself, “Why does God let this happen?”

I understand the purpose and effect of Veronica’s disability on my life. Through Veronica, I have learned how precious life is. Every minute of the day has meaning and purpose. I never take her two-armed hugs or spilled glasses of milk for granted. I clearly remember her first steps and the way her face lit up as she headed toward me with outstretched arms.

I didn’t see God until I saw Veronica the day she was born—legs twisted and arms lifeless. I believe God puts these amazing people in our lives—even if they are only here for a minute—to soften our hearts and force us to look beyond ourselves.

But despite all of that, I just don’t understand what good Veronica gets out of all of this. Sure, I could be Miss Polly Sunshine and go on and on about how she touches people’s lives and makes us realize what a gift walking is, but I can’t do that anymore.

Veronica is a happy and outgoing child, but her feet and legs are a constant source of pain for her. She hates sitting in a wheelchair while her friends are jumping in the inflatable bouncy house at the birthday party. She can’t wear normal shoes, and she probably won’t be able to wear heels to her prom. She will never know what it is like to run in the rain or jump rope.

*

The foot surgery in Dallas was a success.

When Veronica healed from the surgery and began walking again, she attended a summer camp in Texas for children with Arthrogryposis. The last night of camp, while performing in the talent show on stage, she fell. I watched my baby trip and fall backward and cry in pain. She lay on the stage with her legs twisted underneath her, and I wanted the world to stop moving. I wanted the pain to stop. I wanted to be dreaming. “Oh my God! Oh my God!” she screamed.

I have been told that I appear composed and rational even when the world throws me curveballs. After the accident, I was able to keep my composure, remain calm and get Veronica to the emergency room without losing my cool in front of everyone.

But despite my outward appearance, I just wanted to hold my daughter close to my chest and scream at the top of my lungs. The moment I reached the stage and looked down at my baby’s twisted legs, I thought to myself, “I hate God.” If he had been standing in front of me, I would have told him to fuck off. I would have asked him, “Is this some sort of sick joke? Has this child not suffered enough for you?”

Later in the evening, when Veronica and I were waiting to see the doctor in the back of the emergency room, I felt it was time to address the reality of the situation. We had not spoken since the accident. I had spent the time holding her in my arms and stroking her soft brown hair while she cried.

But now she was sitting in a wheelchair and I was sitting across from her on the gurney. We were alone and she had finally stopped crying. I put my hand on her arm and looked her in the eyes. “Honey, I’m not sure if your leg is broken, but you have obviously done something very bad to your knee.”

She began to cry again. “Mommy, why does bad stuff always happen to me?”

I again held back the tears and took a deep breath. “I don’t know, sweetie. But I do know that everything happens for a reason, so let’s try to look at this situation and see what God is trying to tell us.”

We sat silent for a moment and then I said, “Sweetheart, you want to know what I think?” I paused for a moment to regain my composure. “I think it’s time for you and me to come to terms with the fact that you are disabled, and falling and hurting yourself is just going to be a fact of life. You can’t let this destroy you—you have to find the strength inside yourself to overcome this pain and frustration and become a bright light in a dark world.” I felt guilty for not believing my own words; I did not know if she would believe me either.

Veronica sat quietly in her wheelchair for a few moments—she seemed to be soaking in my words. “I guess, but I’m just so tired of all of this. I just want to be normal.”

And I thought to myself, “I do, too.”

The doctor put a cast on Veronica’s broken leg, and we flew back home to Savannah to try to catch our breaths and make sense of everything. She had surgery in Jacksonville at yet another new hospital later that week.

We were both exhausted. I wasn’t sure how we would survive another surgery and another painful recovery. As I sat alone in the waiting room during Veronica’s surgery, I knew all I wanted to do was sleep. I wanted to sleep for days uninterrupted. I wanted to wake up and find out that all of this was just a nightmare.

That night in the hospital room, I was determined to let my little girl get some sleep, too. That is why I asked the nurse not to wake her. I insisted on giving her one night of uninterrupted sleep and, for the first time in ten years, I succeeded. Maybe it was God’s way of cutting her some slack—or maybe we just got lucky.

Either way, I’m working on accepting the hand Veronica was dealt. I pray she is more forgiving of God than I have been. Despite my shaken faith, I believe that all of these painful surgeries will make sense to me one day—and God knows it. But until then, I will be mad at him, and he will just have to be understanding of me for a change.

 

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