LONGER THAT EXPECTED: ADULTHOOD AFTER LIFE-THREATENING CHILDHOOD ILLNESS A Wising Up Anthology
I. I KNOW WHAT STORY I'M LIVING
“God will get us through this,” his father said as if it were a promise, a declaration to his wife they would weather the storm.
“He’s never failed us yet,” she said as she put her hand against the incubator holding her newborn son. “Let’s name him Alexander. I saw it listed in the book of baby’s names, and I remember smiling when I saw its meaning.”
“What does it mean?” his father asked.
“It means warrior. Our son will be a warrior,” his mother said.
“You mean our son, Alexander, will be a warrior.”
They say you remember your birth, the moment when you fight your way into a world far different from the confined space within your mother’s womb. Alexander swore he remembered movement. The force of his legs moving against rib and muscle. His arms reaching for the familiar voice who cradled him. But then it all stopped. He felt stuck in some narrow channel, claustrophobic and wanting out.
Alexander’s mother had been pushing for hours in the delivery room, but her labor wasn’t progressing.
“Get the forceps.”
“Is there something wrong Dr. Clifford?”
“We need to get your baby out Mrs. Jones.”
“What’s wrong with my baby,” she cried as another labor pain caught her breath.
“Stay calm Mrs. Jones. We just see a change in heartrate and we know you are very tired.”
Forceps seized Alexander’s head. Not a minute to waste. He had to come out. The doctor’s hands moved with such intensity against his scull that the delicate bones in his neck snapped like a twig. His mother never heard Alexander’s cries. His breath lost in the chasm of a C1 (atlas) and C2 (axis) injury. His first experiences in his new world: the lock between the shank gripping his skull into a submissive birth and then the minuscule breathing tube forcing air into his tiny lungs, lungs so incapable of breathing on their own.
“Your son is paralyzed,” the doctor said without a hint of remorse. It was a normal day for him. Say what you need to say and be on your own way for the rest of your hospital rounds. His mother’s eyes darted back and forth between her little boy and his father. Tears of loss, tears of anger, and tears of hope washed over both of them as they grabbed each other’s hands. His father wanted to yell, “It’s your fault. If you were more careful, this wouldn’t have happened.” He wanted to take him by the neck and squeeze, but then he remembered he wasn’t the one in control.
The battle waging war against Alexander required a warrior spirit. Every day the rhythmic whooshing sound of the ventilator coupled with the momentary pauses his parents grew accustomed to kept him in survival status. In his first month of life, they inserted a G-tube for nourishment. Seeing an apparatus feed Alexander, made his mother jealous and sad. More than anything she wanted to cradle him in her arms and nurse him. She wanted to be the nourishment, not some pumping monster.
# # #
The 24-hour care left his parents emotionally and physically drained. While one slept, the other cared for Alexander. The dark circles around their eyes and their slow movements throughout the day as they did everything the doctors taught them to do proved their level of exhaustion.
“We can’t do this alone,” his father said. “You need sleep. I need to get back to work. We need help.”
Just as he said his final words, music from the apartment across the hall reached decibels that made Alexander howl in unison.
“I guess we should find a better place to live too, a quieter place. What do you think?”
“I am afraid to leave him alone, but I do agree about getting a house or something.”
“Having nursing care is not leaving him alone.” Alexander’s cries didn’t die down. “Go get him. Will you please? You can’t just let him cry.”
“I am about to go over and give those punks a piece of my mind. They drive me crazy night and day with that stupid music.”
She walked to his room and stroked his head. He quieted “That’s not what I meant. I don’t know if I trust anyone else to care for Alexander."
“You have to. You don’t have a choice. If you run yourself into the ground you won’t be able to care for him. Come on. You know I’m right. We can’t do this on our own anymore.”
“If we hire a nurse, they are going to be scrutinized. I will want to know their entire life history.”
“That doesn’t surprise me one bit. You have always been the Mama bear protecting her cub. You are just as much of a warrior as Alexander."
# # #
Alexander never reached the milestones of little boys his age. He never rolled over, sat on his own, or toddled across the room. He did, however, go to school with other children his age, but that even became difficult when seizures plagued his life. They came on so suddenly.
Alexander’s mother reached for her cell phone in the wee hours of the morning.
“Mrs. Jones. It’s Karen. You need to come quickly.”
She grabbed her housecoat as her husband stirred in bed and opened his eyes.
“What is it Jane?”
“I think something is wrong with Alexander.”
Alexander’s little brother opened his door as they ran down the hall.
“What’s going on,” he asked as he rubbed his eyes.
“Nothing. Go back to bed.”
James didn’t listen. He followed his parents to his brother’s room in the back of the house.
“He’s having some seizure activity. It’s different from the normal tremors. He bit down hard on his tongue, so don’t be alarmed by the blood on his chin. I called 911. They should be here any second.”
“Go watch for the ambulance James, and holler when they get here.”
According to the ER doctor, low sodium levels caused the seizures, so they started adding salt and water to his g-tube. It was just the beginning.
By the time Alexander reached eighteen, surgeries became commonplace. Rods reinforced his spine because of scoliosis, but when they removed his colon things went from bad to worse.Something seemed different to Alexander. Fear gripped him, not letting go. He wondered. He wondered day and night if he would face surgery again. His bowel twisted like a can of worms.Fluid from his descended stomach could not be emptied fast enough into his ileostomy bag. Shooting pain ripped through Alexander’s right side, cutting deep into his fears as well as his body. A micro-perforation of his bowel caused peritonitis. He couldn’t understand what was happening to his body as he fought for his life. He was dying.
“I recommend hospice care,” the doctor stated in his usual bedside matter to Alexander’s parents. “He is unable to eat, which means he won’t live past a few days.”
“Well do something then. Can’t you give just give him something?” His father said as he threw down his briefcase on the floor.
“That’s what hospice care is. We make them comfortable.”
“That’s not what I meant. Fix it. Make it better. Just do something other than giving up,” his father yelled.
The doctor simply said, “I’m sorry.”
His parents watched Alexander lying in the bed as he always did, but this time death lurked just around the corner waiting to take him as he slept. Unbeknownst to them, Alexander was not asleep as they made the phone calls to the family to have them come up and say their goodbyes. As everyone stood by his bedside saying prayers and saying goodbye to their beloved son, brother, grandson, and friend, Alexander opened his eyes.
“If it is meant to be, it will be,” he declared. “But I don’t believe this is my time and I am not ready to die.”
"It's because you are my warrior son," his mother declared as tears ran down her face.
"You named him well. We are blessed,” his father said as he kissed Alexander's forehead.
Alexander didn’t die.
MARC BUCHHOLZ is a quadriplegic due to a C1 (atlas) and C2 (axis) injury during a forceps delivery. He counts it all joy that he has survived numerous surgeries and health related issues. Marc currently lives with his parents in Fairport, NY. He is thankful for their unconditional love and support throughout the years. He recently graduated from Monroe Community College, a major milestone for him. Marc is a Chicago Cubs Fan and has the memorabilia to prove his devotion. Marc enjoys painting using a brush in his mouth.
What kind of misperceptions do people have about the kind of illness you have?
Since I am on a ventilator due to my spinal injury at birth, they believe I am unable to communicate my needs or speak, so they do not try to build a relationship with me and talk to me on a regular basis. When they think of my disability, they automatically presume I am not intelligent. They only see the wheelchair; they don’t see me. They also have the notion that I am not interested in walking. They think it should be one of my goals in life. I honestly do not have this wish because I have never been able to walk.
What do people misunderstand about your own experience of your illness?
People do not understand that I am able to overcome challenges. My spinal cord broke from C2 to C3, so they believe I am unable to feel anything. I still feel some sensations. I am a college graduate, but people often think I do not engage in daily activities because I am unable to work a regular job outside the home. I enjoy life by what I am able to do instead of what I am unable to do.
What is an important source of strength you have found through this experience of childhood illness that has helped you as an adult?
I believe in God and have faith to get through my daily trials. It has brought me through many trials when it comes to my health, and it has also helped to live life looking at the positive aspects versus the negative. My source of faith and reliance on God has strengthed me over the years, and it has matured me and made me realize that even when I am not in control, God is in control. I am blessed to have a very supportive family. They have stood by my side and have given me the advice I often need. Their reliance on God has been my inspiration. It has been tough for them as well, but seeing their perseverance inspires me.
What is a question that you would like people to ask you about your experience that they rarely do?
I would like people to ask me about my disability versus making assumptions. They should ask me about how I am taken care of on a daily basis. I have round the clock medical staff to help me. People often make assumptions before they know the facts.
How has your experience of life-challenging illness at an early age changed your own understanding of what it means to be an adult?
I needed to experience life skills much quicker, rather than to rely on other people to accomplish these tasks. I am less judgmental about people who are going through their own life challenges and problems, which helped develop empathy in me.