Maura was my younger sister, the only daughter in a family of three boys; a beautiful, bubbly, freckle-faced Irish American girl with dimples that showed when she smiled. Three years younger than me, Maura was my parents’ golden girl, the baby of the family.
Good Reads: Before and After by Brian F. Mullaney, Co-Founder of Smile Train and WonderWork.
Ours was a middle class, Irish American family living in a detached house in a suburb of Washington, DC. My dad was a lawyer and my mom stayed at home and took care of us—me, my older brother Joseph, my younger brother Sean, and Maura. From week to week, our lives followed a pretty much identical pattern. On schooldays, Mom made our lunches and took us to school, and in the evenings we did our homework and waited for Dad to come home for family dinner. On Sundays we went to church, on Mondays, we went to CCD after school; we said our prayers before bed each night, and when we did something wrong, we went to confession. My brothers and I were altar boys. My uncle was a Catholic priest. We brushed our teeth, combed our hair, kept our shirts tucked in, and ate all the food on our plates. We were the definition of unremarkable. This was how life would always be—or so we thought.
Maura was kind and smart and loved to make people laugh by writing rhymes and poems. “You’re not my father, sister, brother,” she wrote to my mother one Mother’s Day. “So that leaves you as my mother!!” Mom was especially thankful to have a daughter to give her some relief from all the testosterone in the household, even if it was inevitable that, with three big brothers, Maura turned out to be a bit of a tomboy. I can remember my sister always trying to keep up as we played baseball or tore around on our bikes. Sometimes she’d skin her knee or twist her ankle and we would all rush to help her, terrified our parents would punish us if she got hurt—but Maura would brush away the tears and get right back up and say, “That’s no way to treat a lady!” Then she’d laugh and we’d all start playing again.
Maura was eight years old when she got sick. I was in seventh grade at the time. I had just finished basketball practice when the coach came to get me in the locker room. He said, “Mullaney, you have to go home, it’s an emergency, your mom needs you.” I had no idea what was going on but I toweled off, got dressed, and raced home. I found Mom in Maura’s room and she was frantic. Maura was sitting up in bed, sweat pouring down her face, eyes wild. She was shaking her head from side to side, trembling, having convulsions.
My mom had been trying to reach my dad all afternoon, but he was a lawyer working for the government then, and that day he had been called to a meeting at the White House, where he was completely unreachable. Mom had telephoned our family doctor right away, but since Maura had recently had German measles, the doctor had told my mom that a fever was normal and there was no need to go to a hospital.
My mom had accepted his advice at first, but now anyone could see Maura was far from normal. My little sister was hallucinating, making no sense. My dad had yet to arrive home from work, but Maura kept saying over and over, “There’s my daddy over there with his head cut off. There’s my daddy, but my daddy’s dead!”
We wrapped Maura up in blankets and I carried her down to the car. All the way to the hospital—with Maura shivering and convulsing in the back—we prayed for her. We prayed that every red light would turn green and that every car ahead of us would clear out of our way so we could get Maura the help she needed as soon as possible. By the time the emergency room doctors saw her, her fever had soared to 107.
After that, my brothers and I didn’t see our sister for two weeks. When our parents finally brought us to the hospital, they warned us that Maura “looked a little different.” That was the understatement of the century. As we walked into the ward, we saw our sweet sister’s face was covered in vicious red blotches and lesions. She had lost clumps of her hair. Her eyes were oozing and glassy. She couldn’t talk because her vocal cords and her tongue had been burned from the fever—and when she tried to speak she sounded like a 90-year-old woman. Her temperature had soared so high it had permanently damaged her skin and internal organs. She had lost twenty pounds, had trouble breathing, and was so weak she couldn’t stand up. In two weeks she had gone from being our happy, healthy little sister to this frail shell of a human being. It was shocking.
It turned out that Maura had a life-threatening and extremely rare skin condition called Stevens-Johnson syndrome. The odds of getting Stevens-Johnson is somewhere in the region of three in one million—only a little higher than the odds of getting struck by lightning. The difference is that lightning usually produces a short and merciful death, whereas a person with Stevens-Johnson can linger for years, slowly and painfully withering away.
My parents were adamant: Maura could be saved. The way they saw it, it was a miracle that she had survived the fever at all—she had fought her way through that, so who was to say she wouldn’t continue to improve? They took her to another hospital for a second opinion, and then a third. For months they flew all around the country—Cleveland, New Orleans, Minneapolis, Milwaukee—seeing one specialist after another. Each time they would leave with their hopes high and come back with their heads low.
There were short remissions that gave everyone hope. It seemed like Maura’s skin was improving, and that if the sores in her mouth and throat healed some more, she could eat and gain some weight. At one point her doctors sent her home, and Maura decided to she wanted to go back to school. Maura was so sick; her face and body were still covered in lesions, she had dark sunglasses to protect her damaged eyes, and a wheelchair for when she got too weak to walk. By then our family had moved to Boston for my dad’s work. We were all new in the school, and we knew Maura would be the object of ridicule, teasing, and humiliation from the other kids. But Maura was determined to return to school. Even when the other kids stared and called her names, she kept going to her classes.
I was in awe of her courage and I felt fiercely protective of her. When we were out together, I held her arm to help her walk or pushed her in her wheelchair. If I ever saw someone staring at her, I would shoot them a look that said, “Keep staring and I’ll punch your lights out.” I was furious that she was going through this, that our whole family had been turned upside down.
After two long years, my parents had exhausted the list of doctors and specialists. Maura kept having relapses and setbacks; she was wasting away. No one ever spoke of it, but we had reached the point where there was nothing left to do but wait for her to die. Her bedroom, once filled with dolls, books, and trinkets, now looked like a hospital ward. There were bottles and jars of medication, lotions, and ointments everywhere. She had terrible wounds all over her body, and my mom was constantly applying salves and dressings, desperately trying to make her comfortable. Maura had gone from 100 pounds to 60. There were deep hollows under her cheekbones. You could see her ribs; she had sticks for legs.
For the first year after she got sick, I prayed every night for her to get better. When I went to church on Sundays, I pressed my hands tightly together and asked God to please help her, to take her illness away. But in the end, Maura was in so much pain, and her suffering so awful, that I began praying for God to take her away. I thought it would be better for her. Selfishly, I also thought it would be better for me.
I’m ashamed to admit this, but I’d begun to resent all the time and attention Maura was taking away from my brothers and me. Our parents were completely preoccupied. Around the time Maura got sick, my mom had found out she was pregnant, so not only did they have Maura to take care of, they had our newborn brother, Evan. We older kids had to fend for ourselves. We had a housekeeper who stayed with us when our parents were traveling with Maura to the various hospitals, but mostly we were on our own. We learned to do our own laundry, make our own lunches, and fill up on cheese sandwiches for dinner. We couldn’t have friends over anymore. Even when our parents did come home, they were usually in horrible moods. Their day-to-day lives were filled with so much tension, misery, and pain; they were constantly arguing and fighting with each other.
At thirteen, I was deeply insecure and constantly worried about what people thought of me. To an immature kid, it’s just embarrassing and inconvenient to have a sick sister. I didn’t want to be the one pushing her around in a wheelchair. I didn’t want to stand out. We had gone from being a normal family to the people everyone stared at and pitied. I hated it.
One afternoon, toward the end of Maura’s life, I remember sitting next to her on the couch watching TV. She had bandages wrapped around her arms and legs. Her eyes were swollen and her face was covered in sores. For some awful reason, we were watching the Miss America pageant: all these beautiful young women talking about what they were planning to do with their lives, how they wanted to become teachers and Ph.D. scholars and veterinarians and marine biologists, how they were going to have two kids or three kids or even four.
I remember looking at Maura and thinking, My baby sister is never going to grow up or have a career or fall or love or get married or have children or do any of those things. I couldn’t imagine what it must have been like to be Maura, sitting there and knowing that she didn’t have a future, at the age of only nine. We sat watching that TV show in complete silence. There was nothing to say.
Just before her tenth birthday, Maura wrote another poem:
Thursday I’ll be ten years old
Big and bright and brave and bold
I’ll know everything to know
I’ll be smart from head to toe
So be nice to me on Thursday
That is all I have to say . . .
Two months later, in September 1973, Maura had another relapse. She woke up in the morning coughing and choking, unable to breathe. My parents rushed her to the hospital. We boys went to school.
A few hours later I was in class when a voice came over the loudspeaker: “Brian Mullaney, please come to the principal’s office.” My dad was there waiting. He didn’t have to say a word. I followed him out to the car where my two older brothers were sitting. No one spoke as we drove home. We all knew that Maura was gone.
On the day of her funeral, I got up, put on my blue blazer, a tie, and dress pants, and went with my family to our church. My brothers and I were pallbearers. I can still remember bending down to pick up her casket, expecting it to be so heavy, and instead, it was light as a feather. By the time Maura died she had lost so much weight that the coffin probably weighed more than she did. My brothers and I were eleven, thirteen, and fourteen years old, carrying the body of our ten-year-old sister.
After church, we went to the cemetery, and Maura’s tiny coffin was lowered into its small grave. I don’t remember much more about that day, except for my mother’s sobs in the church and the contortions of my father’s face as he did his best to stay strong.
I didn’t cry at her funeral. Maybe it was the shock, or perhaps I was just too angry for tears. But afterward, I felt horribly guilty about this and thought something might be wrong with me. What kind of person doesn’t cry at his little sister’s funeral?
Then, two weeks later, I was alone in the house and the phone rang. I answered it and someone asked, “Is Maura there?”
I froze. I didn’t know what to say.
“Is Maura there?” the voice on the line repeated.
I hung up the phone and started to sob.
Good Reads: Before and After by Brian F. Mullaney, Co-Founder of Smile Train
