A Mother’s Letters
By: Stephanie Gomes
(Originally published in The News-Gazette, Friday, June 6, 2008)
Writing from the first person point of view was much more difficult than any other journalism piece I have ever written, especially when it was family subject close to my heart. Also, along those lines, interviewing family members was more challenging than interviewing a stranger. Where do you begin when you have known someone your whole life? But, I learned that with proper editing and patience, a great piece can develop. To this day, I’m still very proud of this article.
[For this story,] I received 8th Place in the 49th annual William Randolph Hearst Foundation’s Journalism Awards Program.
– Stephanie Gomes
My brother is waiting for me when I walk in the door. He usually is. We stand there for a moment and exchange our usual punches and loving insults.
“So, I see you’ve been working out a lot,” I say sarcastically, punching his skinny arm.
“Shut up,” he says, laughing.
I can’t help but look at the left side of Mason’s face, which is still very swollen from his last surgery. The skin on that side of his face juts out slightly, and his left ear, which is closed shut, lies almost flat against his head and droops about an inch lower than his “good ear,” as he calls it. When looking straight on, you can hardly see that ear. His head of coarse, dusty-blonde hair hides the massive scar from his first surgery 14 years ago.
Mason, at 17 years old, is the baby of the family and suffers from a condition called neurofibromatosis. It is a rare disease that causes random growths of nonmalignant tumors on nerve tissue. At age 3, he was in surgery for 19 hours to remove a tumor in the left side of his face that could have filled a soda can.
The faded scar starts near the top of his head and continues down the left side of his face, passes through his ear and ends under his chin. A small section of the scar was reopened last summer during a jaw surgery and is still pink and healing. The scar splits his head in half, according to Mason. To me, his scar does not look strange or startling. If you ask Mason, he will say, “I don’t notice it any more.” That’s the way Mason responds to his condition. “It’s just the way it is.” Sometimes he will even make a joke about it. “I only have to clean one ear,” or “I only need one headphone to listen to music.”
My mom and dad give me a hug, and we take our places at the dinner table. Conversations and laughter about school and work fill our small kitchen. When dinner is done and the kitchen is clean, I ask my mom about the journal she kept during and after Mason’s first surgery. This is the reason I am home this weekend from college at the University of Illinois. After two horrific surgeries, my brother is now begging my mom to schedule yet another surgery this summer to improve his appearance. For months, I’ve argued with my brother about not getting any more surgeries unless they are absolutely necessary, but to him this one is necessary. I am searching for some answers and a deeper understanding about his condition. I’m not sure why my brother, who looks perfectly fine in my eyes, would want to go through surgery once again. To top it all off, his doctors now fear that his original tumor is beginning to grow again.
Without saying a word, my mom walks to her file cabinet and pulls out a yellow notebook. Its 67 pages have never been read by anyone in our family, not even my mom, who wrote them. She tried once but broke down crying after the first page.
“Geesh, that’s long,” says Mason as my mom places the original copy along with a photocopy on our living room coffee table.
“Well, you were in the hospital for a long time,” she says.
As Mason and I start reading our respective copies, my mom and dad go downstairs and turn on the TV. It is still too painful for them.
The events of the past week have become a blur, and, in an attempt to help me deal with my thoughts and emotions, I have decided to write to you about the people, events and decisions that will affect the rest of your life. You are only three and none of this has any meaning. You are healthy and happy and have no knowledge of what lies ahead. At some point in your life, all of this information will become very important to you. By writing to you, I hope to rationalize some difficult decisions that were made and courses of action that were taken.
“It was the only thing that kept me sane,” my mom told us later. “It was a way to occupy my thoughts and to make sense out of everything. It was something that I could control.”
In the waiting room of St. John’s Mercy Hospital in St. Louis, she wrote about Mason’s diagnosis and about the discovery of the massive tumor. She wrote about watching Mason get wheeled down the long hospital hall without a clue of what was about to happen to him.
This was truly the hardest thing we’ve ever had to do. As you were wheeled away from us, we sobbed. Your Dad and I fell apart; there are no words to describe the anguish parents feel when their hearts are breaking.
Mason was served by an army of surgeons: two neurosurgeons, one cranial base skull surgeon (one out of three in the country who would attempt the surgery), and a plastic surgeon. Every few hours, a nurse would appear and return down the long hall to inform my parents and relatives how the surgery was proceeding. After nearly a full day of tears and prayers, the good news came: They had removed the majority of the tumor without major facial nerve damage. They were even able to save the ear but were forced to close up the original opening. My mom went on to document Mason’s entire stay at the hospital and his recovery for weeks after.
Your crying in pain was very upsetting to your dad and me. We felt helpless as the nurses manipulated you and your “spaghetti” network of tubes and wire. I had a desperate need to hold and comfort you, but this was impossible at this point. I kissed the top of your shaved head; it was bristly and swollen.
At the end of his stay, I was finally able to see my brother. At age 8, I had no idea of the severity of the situation. All I knew was that my brother had surgery to remove a tumor, and my family had missed my birthday, something I held against my parents for years after. I did not understand that my brother could have died. I did not know that his head was swollen to double its original size. I did not know that my parents had hardly slept for days. I walked into the room with my older sister Jessica and saw my brother on his hospital bed. Since she is 5 years older than me, she became my surrogate mom during my parents’ absence. I followed her lead.
You really lit up when they walked in the room.
Mason’s head was shaved and still swollen, and a big, scabby scar marred his face. His speech was slurred, and I did not understand what he was saying. I was afraid to touch anything, recalled my mom. I think I was afraid I would hurt my brother. That afternoon at the hospital my family took my brother on wagon rides up and down the hospital hall. What I remember most is that I wanted my family to come back home.
I heard you crying and hollering from the hall. It’s so difficult to be your mom and to be unable to make your pain go away. I’m trying to have faith that you will not remember this.
While the events of Mason’s first surgery are vague for me and my brother, the details of his recent surgery remain extremely vivid. Last summer, my brother had major jaw surgery, which has been the only real setback since his original surgery. He proved the doctors wrong when the tumor did not grow back and when he regained full facial movement. Yet, due to all the pressure and scraping along the left side of Mason’s jaw during the original surgery, calcification developed in the joint area. A surgery was performed in 1999 to fix it but, eventually, the left side of his jaw became completely calcified at the joint. The X-ray of his jaw showed one massive, bony structure. The oral surgeon’s plan last summer was to saw the bone in two, right up to the joint. Mason was excited because, while he was in there, the doctor planned on operating on his chin to make it look more normal.
“When we scheduled the surgery, I was excited by the fact I was going to be able to open my mouth,” says Mason. “Then he suggested the chin and Mom said my eyes lit up. It sounded sweet because I have always known I don’t have a chin.”
Mason says his chin is the only thing that has really “bugged” him, because he thinks it makes him look younger than he is. “The scars don’t bug me, and the ear, I would like it to be fixed, but it’s not going to happen soon so I just accept it until then.”
Everyone in the family was nervous about the jaw surgery, except Mason.
“I was actually looking forward to it,” he recalls.
My parents and Mason left for the hospital the day before his surgery. I gave my brother a hug before he left.
“Next time you see me, I’m going to have a chin,” he said, smiling.
I had a horrible feeling about the surgery from the start. I waited by my phone the next day. At 10 p.m., my mom called and told me there had been complications, and Mason had to be put ona ventilator. When the doctors opened up the original incision, they discovered the area had filled with new and tiny blood vessels, meaning Mason almost bled to death. He was given 10 units of blood, and a vascular surgeon had to tie each of the blood vessels shut by hand. I dropped to the floor crying. My mom began crying on the line with me.
My older sister came to stay with me while Mason was on the ventilator. She kept me strong just as she had when I was 8. We talked and cried together while waiting for my parents to call with any updates. After 34 hours, we got the phone call that Mason was off the ventilator and breathing on his own. The next step was going to see him in St. Louis, something we never thought we would have to do again.
We have now been here in St. Louis for one week. Things have progressed so well that I truly feel you are the “miracle” child.
Fourteen years had past since all five of my family members were in a hospital room together. As I walked into the room, the first thing I saw was my brother’s swollen head wrapped in white gauze. He looked at me, and I started crying. I had to leave the room, and my dad came to get me. He understood exactly how I felt. Neither one of us is very strong when it comes to seeing Mason in pain.
When Mason came home from the hospital, he was a walking skeleton. He had lost 15 pounds and weighed only 97 pounds. Overall, the surgery was a success, but he was not able to get his new chin because of the complications.
“The most frustrating part of it all was the part of being hungry and not being able to eat,” he said when he got home. “I didn’t really hurt. Sometimes, I think I am immune to pain.”
Mason’s recovery took longer than any of us had expected, and he often became frustrated. His facial muscles were weak, and he would often drool. That and the massive swelling kept him from going out in public.
“I just didn’t feel like going anywhere,” he said. “Because I knew I didn’t look good.”
In a way, this surgery was worse than the first because the terrifying complications were unexpected.
“We were prepared for his first surgery,” said Mom. “But not for this one.”
I stayed home with Mason every day for nearly a month after his surgery and helped take care of him.
“You got me joking like we always do,” Mason says. “You tried so hard. You would always say, ‘Wow, your face looks good today.’ Even when it didn’t.”
Dec 25th: In the evening, you asked, “What’s in my ear? You felt your ear for the opening and felt the closure. I explained that they had sewed it up because of the tumor. You accepted this explanation and I felt sad inside.
Two hours after Mason and I began reading my mom’s journal, with tears in my eyes, I finish. I sit and wait until Mason is done. He finishes and immediately begins asking medical questions of my mom, who has now joined us.
“You mean there’s still a piece of tumor in there?” he asks.
“Yes, they weren’t able to remove it all,” my mom says, and Mason touches the side of his face.
More questions fly out of Mason’s mouth about ventilators, catheters and other medical technicalities. No sentiment, no emotion, just pragmatic curiosity. I sit in silence, now realizing what my parents went through. This condition is something he is going to have to deal with his entire life. I think about how bratty I was being angry about my parents missing my eighth birthday. It turns out the journal entry on my birthday was the worst day for Mason in the hospital. He was screaming and crying in pain nearly the entire day.
I suddenly think about the time after I had knee surgery in high school, when I began to cry about the scar on my knee. My brother, watching my fit from the doorway, looked at my knee.
“If I could, I would take the scar,” he said.
I think about how strong my mom and dad were and about how unaware I have been about the severity of Mason’s condition. I sit next to my mom and tell her that I had no idea.
“We tried to keep all you kids sheltered from much of it,” she told me later.
I go to bed that night and let everything sink in.
Since reading the journal, I’ve done much research on Mason’s condition. My mom warned me that I may become upset with what I discover. I Google the word “neurofibromatosis,” and what I find is startling: images of people with huge tumors protruding from their faces and the rest of their bodies. I quickly delete the screen. Although my brother has a milder form, it scares me that he has a 50 percent chance to pass this condition on to his children. My parents fear that he will never be covered by medical insurance once he leaves their plan.
Mason has not thought that far ahead. Right now, he is a junior in high school and worried about getting a good score on his ACT.
Mason’s reaction to my mom’s journal surprised me.
“It made me realize what mom and dad went through,” he says. “But I found it really interesting for the medical info.”
“Don’t you ever think about your condition and get scared?” I ask.
“No, it’s just a part of me,” he says.
Reading the journal has made Mason more excited for this next surgery.
I call Mason a week after reading the journal.
“Mom’s working on scheduling the surgery for the summer,” he says with excitement. Mason desperately wants the procedure done before senior pictures next year.
“I don’t think you should do it,” I say for the hundredth time.
“I do. I don’t think you can understand. It’s for me.”
I let it drop. There’s no changing his mind.
Mason is still very swollen from his past surgery last summer, and the reason for it is uncertain.
“Do you think it is back?” I ask Mason.
“Mom has a gut feeling it has come back, but I don’t think it has,” he says. “At least, that is what I tell mom and dad and myself, but I guess in the back of my head there will always be that fear. I just figure if it has come back, I can’t change it.”
My mom calls me a few days later to tell me Mason’s chin surgery is scheduled for July 9. Even if I do not agree with his decision, I must accept it. It is his life, and it’s a hard one. I ask my brother later if he is excited.
“That is the one thing I wanted most,” he answers.
“I know,” I say. And for the first time, I understand.