The only noise in the car during the thirty-minute drive is the soft sound of breathing. While I listen to my parents and my sister inhaling and exhaling, I’m aware that my brother has been unable to perform this simple, essential task for hours now. As we drive toward him, the sky is an abyss of darkness, the air a sharp chill. The clock on the car radio reads 3:01 a.m. No one else travels these roads in the middle of the night, but we have to. This may be the last time we can hold Patrick’s hand and feel a pulse. This exact scenario had played out a dozen times in my life.
Shortly after he was born, my brother received a diagnosis only a few hundred others human beings shared: Trisomy 8 Mosaicism. He was born with an extra number-eight chromosome, which can cause a wide variety of abnormalities. For Patrick, one of the worst cases known, this included stunted physical and mental growth. His entire bone structure was abnormal, from his crooked back to his two left feet. He was deaf and blind. Among the worst symptoms was a severe case of Crohn’s disease, complications in the digestive system caused by inflammation. He had more surgeries than you could count on both your hands and feet. Typically, Trisomies die at birth. But my brother didn’t do things the “typical” way.
My mother chose the name Patrick. She feared he was going to have enough problems; he didn’t need an odd name like his siblings had. Patrick spent the first two months of his life in the NICU at Children’s Hospital in Saint Louis. When a baby is born, doctors assign a number called an Apgar score that summarizes the baby’s health. A healthy child will be scored a seven or higher. Patrick got a whopping three. Doctors unanimously agreed, “Patrick is not going to ever make it out of this hospital.” In what seemed almost like an act of spite, Patrick’s health began improving. Against the professional prediction, he came home. Home was a weird place from then on.
The house was never empty. There was always someone I didn’t know. There was always a new machine. There was always a stir of activity. Two-year-old me didn’t understand what any of it was. I just got used to it.
Every other week, my mother made the half-hour drive to Children’s Hospital so that doctors could check up on Patrick. One specific doctor was regarded as the most advanced, intelligent and educated in the game. He was very quickly humbled upon meeting Patrick. For the first time in his career, he didn’t have the answer. Frankly, none of the doctors knew much. Next door, Washington University wanted to collect data on Patrick in an effort to better understand this rare condition. My mother signed an official release that allowed his medical files to be accessible to the research community. There is no doubt that he will end up in hundreds of textbooks under an alias — textbooks both my sister and I will undoubtedly read.
From Patrick’s early childhood, my life was scripted like an episode of “House M.D.” It was not uncommon for Patrick to stay in the hospital for weeks or even months. It took the highest of specialists that long just to figure out what the problem was. Children’s Hospital quickly became our second home. I could direct you to any wing of that hospital like it was the back of my hand. I can still name every item on the menu and every special of every weekday; Philly cheese steak is available on Thursdays! Most kids grow up on McDonald’s; my sister and I grew up on hospital food.
When we were not in the hospital, things weren’t any easier. Money was always tight. My mom spent most of her time haggling with insurance companies and conferring with doctors. Patrick played with toys, watched cartoons and slept. That was pretty much it. He couldn’t walk, couldn’t talk, couldn’t do most of the things the other seven billion of us take for granted.
Entering kindergarten, we had to take an IQ test. One of the questions was, “How do you feed a baby?” My sister had seen it done in a very foreign way. My brother couldn’t eat food, so he had a direct line into his stomach called a Mic-Key button. You put a can of PediaSure in a tube and connected it to the button. In the IQ test, my sister attempted to do this on a baby doll. The instructor was surprised.
While most of my friends were playing catch with their brothers, I was lying on the floor next to mine. We used to watch cartoons together until we fell asleep. I was still watching cartoons while most of my friends had moved on to dramas and sitcoms.
The best times I had with Patrick were wrestling. He was very good at climbing on top of me when I wasn’t looking. He seemed so fragile until I got down next to him. He wasn’t fragile. He was tougher than titanium.
* * *
Our home wasn’t set up for a special needs child, and our family didn’t have the income to remodel it, so we needed help. Patrick always loved fire engines —the bright red color, flashing lights and the piercing sound of a siren. Due to Patrick’s intense interest, we had built a unique relationship with our local fire department, which was happy to help any way they could. The department even sent in an application for us to “Extreme Makeover: Home Edition.” My mom got a call months later saying that our family was one of two finalists in the area to be featured on the show. We had to send in a video. The next day, we worked diligently to document all the areas of limitation in our home. Another few months later my mother received another phone call. “We’re so sorry, due to your location, production of the show would be very difficult,” the producer informed her. “Therefore, we will not be featuring your family on the show or remodeling your home.” It was a kick in the pants to learn that the show we loved, on which we’d hung so much hope, wasn’t as much about charity as it was about ease of production. We should have known.
We had very good friends and caring doctors. They didn’t like hearing that we lost that opportunity. In response, they submitted an application to the Make-A-Wish Foundation. Immediately we had two volunteers at our house discussing our trip to Disney World.
I was eight years old and had never flown in an airplane before, never even left the state. The attendant on the American Airlines flight gave my brother, sister and me honorary wings, the special pins that pilots wear. They let us meet the pilot and even upgraded our seats to first class.
Upon landing, we were greeted by the kindest driver. She held a bright sign with our last name, and told us she was there to take us to paradise. We got in the van with a wheelchair lift and made the journey to a place I will never forget. This place was aptly named, “Give Kids the World.” There was an ice cream parlor open every day from early morning to late night. Every weekday had a theme. Thursday was always Christmas, every week. Santa was there, gifts were given and Turkey was consumed. There was never a dull moment. It wasn’t just a break for Patrick, it was a break for all of us; one week away from doctors, away from reality.
Disney seems like an ubiquitous part of childhood, and I could finally claim it as part of mine. There was a celebrity essence to the whole thing; we were first in all the lines, there was a VIP lounge where we could cool off and take care of Patrick. We got all-access to all characters, and front row to all events. We had front-row seats to a fireworks show. I could see all of the explosions of vivid color reflected in Patrick’s eyes. Doctors said he was blind, but judging by the way he smiled in response to the colors, I believe they were wrong. While we watched the fireworks, my mom said something that stuck with me. “If this were our last moment,” she said, “it would have all been worth it.”
On the flight home, I turned to Patrick, gave him a hug and said, “Thanks for this vacation.” My mother broke into one of those mile-wide grins that can quickly turn into tears of joy.
* * *
The vacation was magical, but when we got home, we returned to the same problems, the same house that was not set up sufficiently to deal with Patrick’s needs. It was hard to share one bedroom with three kids, let alone with all of Patrick’s medical equipment. So we decided to make it happen without the help of reality television. My parents and their friends set up a music festival to raise the funds we needed. There was an overwhelming amount of support. We raised enough to remodel most of the house.
Things were going as well as we could hope. Patrick had already lived a decade longer than the doctors originally predicted. I began to think that life might work itself out. But that didn’t last.
A year later, when Patrick was eleven and I was thirteen, the upward trend was flipped upside down. Every day we learned something new was wrong. Drugs were starting to harm rather than help his body. He was overcome with fatigue and chronic episodes of pain. He didn’t express much joy anymore. To fix one problem, we would risk making another worse. Everything that could be done, had been done. There wasn’t much else to do but wait it out. There was no chance at being proactive anymore.
Hospital stays hit an all-time high. Sometimes Patrick would be home less than a week before returning to the hospital.
My mother told me straight out, “Your brother is dying.” I didn’t want to believe her, but I feared she was right.
A few months into my freshman year of high school, Patrick had an extended stay in the hospital. It started the first day of basketball try-outs. I haven’t played since. The aggression that had made me such a passionate player turned to sorrow. I lost my passion for the game.
That night was like no other. The combination of stress from my first year in high school basketball and the inevitable end of my brother’s life was just too much to handle. I cried myself to sleep. I put everything on hold. My sister and I missed three weeks of school. We spent our time in that hospital room on the eighth floor. All we could do is look on in silence, waiting for any word from doctors. Each and every day was outright exhausting. Even so, we did not sleep much.
Finally, doctors entered the room. If a doctor ever walks into a room with a frown and a hung head, you don’t need to hear the words. This doctor, the one who doubted Patrick so many times before, told us the cold hard truth. Patrick’s respiratory system was a guaranteed failure. There was only one procedure that could be performed. The procedure was extremely invasive and held low chance of success. Looking defeated, the doctor walked out of the room to give us time to converse.
The first thing I did was hold Patrick’s hand. We’d always had this sort of brotherly telepathy. He squeezed my hand, but it lacked its normal aggression. My parents were talking in the corner. It was time. After over a dozen years of being poked and prodded, it was time for a peaceful rest. We were not going to put him through anything more than he had already been through. There was some doubt in my mind. I didn’t want to let him go. If he were to pass, I wanted him to go with a fighting chance. But I never spoke up.
Doctors called the hospice-care team. My mother had another important call to make. She rang the local fire department and asked for a favor from them, a “last ride” for Patrick.
He got his last ride, which was more of a parade, with his family, friends, and even some doctors. It was a surreal experience, knowing we were driving to the place my brother was going to die.
* * *
Patrick had been in hospice care for four days when my mother and I were out picking up dinner and my father called to say that Patrick was getting worse. My mother raced home. I don’t think I could have lived if I hadn’t been there for his last breaths.
We got home and all I did was grab his hand, but he didn’t squeeze. My tears fell like a thunderstorm. My sweatshirt looked like it had come out of a lake. I haven’t worn or washed it in the year and a half since. Patrick lay there struggling for breath, so we decided it was best to administer a dose of morphine and turn off the breathing machine. I was there, holding my brother’s hand when I heard him take his last breath. It was calm. And just like that, he was on the other side.
The hospice nurse took care of all the paperwork and called the morgue. Two men came and took away the body that once was my brother. The house was an eerie quiet. For the first time in months, I slept. It was over. I don’t remember my dreams, but I do remember waking up feeling like I had run a marathon.
* * *
My sister and I returned to school. My dad returned to work. I forced myself into my studies, getting ninety-five percent in all of my classes. Things ran normally, but normal felt strange. We were so used to having to account for Patrick’s needs that we had never lived the family-of-four suburban lifestyle. All four of us could go out and stay out as long as we wanted; there was no fifth member to worry about at home.
Many of the staff at Children’s Hospital and Washington University know the name Patrick. His life contributed greatly to the fields of biology and genetics. His life steered my sister toward the career as a nurse educator. When my curious sister was the young age of eight, surrounded by nurses, she asked questions, trying to learn what exactly they were doing to our brother. From her time in the hospital with Patrick, she already has more experiences than any other nursing student can claim, perhaps more unique ones than some professionals as well. “I always knew I’d be a nurse,” she told me.
After Patrick’s death, my mother immediately jumped into social work, providing a connection between families with special needs members and resources. This was her first time in over thirteen years joining the workforce. As for myself, I became very interested in regenerative medicine, genetics and cellular biology.
The Christmas after Patrick’s death, my family and I made a trip to the west wing on the eighth floor at Children’s Hospital. This was the place where we spent a great deal of our lives. We knew the staff on a first-name basis. We took a photo with the staff, left breakfast, and donated a collection of Patrick’s many DVDs.
When you enter the hospital, you receive a sticker with the patient’s name, the room number, date of visit and your relationship. I still have the guest pass from that night, as well as three other hospital passes with Patrick’s name and room number printed on them. I keep them as a record of his life, at least the end of it, which came thirteen years later than doctors expected.