Today, it has been eighteen years since I awoke to see my parents softly crying on the opposite end of the room. When I asked what was wrong, the news emerged with wavering diffidence from my father’s lips: “Well, last night, Sara went…to see Kristin.” My mom broke into heaping sobs and ran into the bathroom of our little Ronald McDonald house apartment, locking herself away from the reality that cut her so deeply. I don’t know if I began to cry immediately. I think the power of the notion of my sister’s death had hit me like a ton of bricks, and I was just struggling to process it all in my ten-year-old brain. I know my younger sister was upset. But I can’t remember if she was crying.
I asked what it meant for me now.
“It’s okay to cry,” my father told me.
I said I felt angry. Was it okay for me to swear? I wanted to swear.
“Well, in this case, I think that’s okay,” he said. I bet he wished my mother was there to help him through that oddball. I remember the seething anger that started to rise up inside of me. I felt like it was physically manifesting, coming out of my pores. But I had lay awake in my fold-out bed for hours that week, in the clutch of fear, praying that my little sister wouldn’t die. I wanted to bargain with God to save her, but I was a ten-year-old child who had nothing but her toys to offer. With my hands wrenched tight and tears streaming down my cheeks, I promised I would make it up to God if somehow He could save her. What a terrible God, to let a child die. Was there even a God? I doubted it. I didn’t want to believe in that fable anymore.
My older sister Kristin was the first daughter born to my young parents on March 31st, 1983. My parents were only 24 and 25 years old. They were poor graduate students at the time of her birth. Kristin was born healthy, but it became clear in the following months that something was very wrong with her. She died October 16th, 1983, not even six months old. Whatever was wrong with her was beyond medical technology and knowledge at the time.
I was born only 10 months after Kristin passed away. I had been a huge gamble, because my parents didn’t know if I would be ill too. I was colicky, but nothing more. My sister Megan followed in 1986. My parents worried about her as well, but she turned out to be perfectly healthy, just like me. When I we were very young, our parents told us of Kristin and her illness. I always just imagined her as being sick, like she had a cold. This was the narrative I had in my head, because I was naive. I don’t know what Megan thought of it. But for me, it wasn’t until I was faced with the reality of Sara’s illness that I understood.
My youngest sister Sara was born healthy in 1990. Like Megan and me, she went in to the doctor for regular tests to ensure she didn’t have Kristin’s illness. But when she was about three months old, tests started coming back with strong indications that she was indeed ill. She was diagnosed with Familial Hemophagocytic lymphohistiocytosis. I couldn’t spell that for years, let alone pronounce it. But I knew, even from the age of six, what this meant. It meant that she could die, because my older sister died from it. It meant that her immune system didn’t know when to stop attacking bad cells. It would attack her good cells until it destroyed her body. That meant even a cold could become life-threatening. And that meant a lot of isolation for her.
I remember a lot of panicked decision-making in a short period of time. Little Sara would be treated experimentally with chemotherapy — something that wasn’t guaranteed to work, but could perhaps keep her alive long enough to receive a bone marrow transplant. I believe it was every other weekend, or maybe every two weeks, that we had to trek to the hospital and watch my tiny baby sister be hooked up to machines. The small fluff of hair she had when she was born disappeared. Her eyebrows and eyelashes fell out, too. This wasn’t much of an issue early on, but it started to become a problem as she grew.
I remember shopping at Target with my mother, Megan and Sara. A lady commented about how bald Sara was. My mother owned her, so to speak: “She’s on chemotherapy and has lost all of her hair.” My mother already had bonnets for her, but as Sara got bigger, she began putting a floppy bucket hat (remember Blossom?) on her to keep people from commenting. I would overhear comments about her despite her protective helm. Rage began to grow inside of me. I mostly remained silent, but I wanted to choke people who made fun of her. One time, on the bus while I was going to swimming classes, my mom, Megan, and Sara waved goodbye at me from the parking lot. I waved back.
“Look at that kid,” said some brat behind me. “It’s got no hair.”
It. Lack of hair erases your identity to such an extent that you aren’t even credited as human? I started to cry, despite my anger. Sara still smiled and waved, having no idea what was being said of her. I wondered how many other people made fun of her while I couldn’t hear. I turned around to face the kid in the seat behind me.
“She is my sister,” I said, trying to hide my tears with my anger. “And she’s on chemotherapy. That’s why she has no hair. She’s sick.”
The kid sort of just shrugged at me. I wanted to break his nose. In retrospect, chemotherapy was probably the biggest word he’d ever heard, and he probably had no idea what it meant.
This picture says it all. Sara’s feelings about her lack of hair were heartbreaking.
Among my friends and peers at school, though, Sara became loved. Most kids didn’t understand what was wrong with her. But they knew she was special. It was okay to bring Sara in briefly while my mom picked up Megan from preschool, and she obviously loved being the center of positive attention — who wouldn’t, when normally people fawning over you end up poking you with giant needles and IVs?
One time, as we picked Megan up from preschool, my mom panicked. She saw spots on a kid’s skin. Was it chickenpox? My mother fled, I remember literally running to the van with her. Megan and I were confused at first, but our mother explained that we now needed to watch her for spots. Well, she came down with it, had to go into the hospital, and when she was stable, Sara had to be on an IV drip at home as she struggled through healing her chickenpox. Most other kids got a shot and maybe some boo-boos that scarred.
Sara had a couple of times when her disease went into remission — these periods were bittersweet. It was a hopeful time, but simultaneously we remained wary. We knew that her improvement was good, but the possibility of her remaining stable wasn’t high. Sometimes she’d go for a few months with no chemo. Her hair would start to grow back, and she would be so excited and happy. When she inevitably had to go back on chemo, all her hair would fall out again, and I would see the anger and fear on her face once more. The poor kid was only three years old, and all she wanted was a life where she wasn’t feeling crappy and sick all the time. She wanted to brush her hair and play with other kids. But my parents taught her not to feel sorry for herself. It was pretty remarkable that she didn’t complain very often.
The summer of 1994 Sara went in to get her bone marrow transplant. The transplant itself was actually largely successful, from what I remember and understand. Megan and I went back to school in the fall. Every weekend we drove four hours to the Mayo Clinic to see her, becoming a bit scared around the October mark. It had been three months since she was admitted to the hospital, but she wasn’t getting better.
I do not remember the exact date, but I remember I was in music class. I was suddenly called to the office over the loudspeaker. There, they informed me that my father was coming to pick me up, and I needed to be ready soon. We left directly from school. My dad drove about ninety miles an hour to get there as fast as he could. He didn’t tell us something was wrong. It was just there. Looming.
Once we arrived, we went immediately into the clinic. We went around a corner in the hospital, where I saw my mom at the end of the hallway. My dad rushed to her and told us to wait there. When he came back, they told us Sara had some “tests” that we needed to be there for. This didn’t make a lot of sense to me. I can remember my dad choking up while talking to the doctor. My mom looked like a ghost. We went to see Sara, who was in the ICU.
My little sister, cheeks swollen, yet body emaciated, lay still in her bed. A breathing tube was taped to her mouth, creating a crude impression of a circle around her chapped, dry lips. IVs were plugged into her arms, and a colostomy bag was on the side of her bed — I had never thought about how that worked before. She had a bandage on her head, where I suppose they had taken a piece of her skull to reach her brain — there was a fungus attacking it. These images will never leave me. I tried to talk to her and she didn’t respond. I asked my parents if she could hear me, and they told me she could. I don’t know if she could. I felt stupid and self-conscious. I wanted to talk to her alone, not with people listening to me.
We lived in the Ronald McDonald House apartments near the hospital. There, I met my friend April, whose brother was there with leukemia. She hung out with Megan and me all the time — we did art projects together (I remember having to go to a class where we tie-dyed T-shirts) and we played Super Nintendo all day. Games became my escape while I was there. Mario could defeat all his problems head-on: Jump on a Koopa or Goomba, defeat a boss, rescue the Princess, end up a hero. I felt like my life was me helplessly flailing at problems, but they compounded rather than retreated, and I ended up ignored or alone. I would read to my sister with other people in the room. I would play games with April and Megan but feel out of touch. Our homework started to be mailed to us at the apartments because we’d been out of school for weeks. I remember getting a box filled with cards for my sister, handmade by my classmates. I was so happy to receive them, that I immediately started to read them to my mother. But she told me she couldn’t listen to it — it was too hard. So I read them by myself. One that I still remember was made by one of my best friends at the time — she was very creative. The card said, “Sara, open the doors to find a surprise!” They didn’t know how bad it was.
I overheard my parents talking at night. They sat in shifts at the hospital. I knew the worst was about to hit when they talked about baptism. Megan and I met with a pastor at the hospital the next day. He baptized all of us. It spoke volumes to me that my sister and I were never a part of this ritual, but suddenly, when my unconscious, terminally-ill sister is involved, we all received the rites. I do not remember which day this was. But I remember them telling me to tell her goodbye. Again, they didn’t fucking leave the room. The stood on the other side, as if that created some sort of barrier. Some people teared up when I choked on my emotions and told her I loved her. I’m not putting on a performance for you. I want to be alone with her. I don’t know if she can hear me, but I want to be alone. The pastors at home had told us we needed to pray for her. This pastor also reminded us of the healing power of prayer. I panicked, thinking that maybe I hadn’t prayed hard enough.
Dear God, please do not take my sister away. I will be a good kid, I will go to church every Sunday! I will never say a bad word. I will try very hard to behave and get good grades. I will give you anything you want, except her. I think I need her more than you do. I don’t mean to say that I’m more important than you, but what could you need with a sick little girl? Her birthday is in three weeks. She wanted to be Darkwing Duck for Halloween. Well, she’s going to miss Halloween, and I’m sad about that, because she was really excited and she was walking this summer and she was getting better. But please don’t make her miss her birthday. Am I doing this right? Can you hear me? Please give me a sign if you can hear me.
The little sister I will always love and miss.
The sound another human being makes when it is in so much pain, when its heart is breaking, when its child has passed on before it: I can’t describe it here. The wracking sobs, the gasping for breath, and the pain in their eyes makes it so unbearable to witness. I hurt too. But my mother couldn’t even look at a picture of her baby without breaking down. I found a drawing of Sara’s and there was a tiny tear in the corner. She became enraged that someone had torn it and tried to tape it back together, to fix and preserve Sara had made with her own hands. (Understandably though, because it was a drawing of our family.) We shopped for her funeral dress together at Target. No one knows you’re buying a dress for a dead person. At her funeral, I watched my mom’s hands shake as she tried to put lipstick on her daughter’s sunken features, complaining that they didn’t make her look good. She wanted make her look as perfect as she could before she said goodbye forever. It was one of the most painful things I have ever witnessed, and in that moment, I wanted to hug her and take away everything that had hurt her. I had written a very personal letter to Sara that they read out loud at the funeral. Why I was always denied the chance to say something to her in private, I don’t know. Maybe because I was so angry but didn’t want to look selfish, so I never said anything. And I guess it really wasn’t about me. But after eighteen years, I say goodbye to her again, publicly, as I have every year since the day of her funeral.
I love you, I am your big sister. I was, like my parents (and unlike Mario) unable to protect you. My life has gone on. I’ve had some good times and some bad times, but every year I examine whether or not I would make you proud. I’ve been told that I wasn’t a good enough Christian and that’s why you died — I fixed that problem (I’m no longer a Christian). I’ve been told my whole life hinges on your death by ignorant people. In some ways, it does. But if they read what I wrote today and still don’t understand how profoundly this has affected me, then I honestly think they are incapable of experiencing the depth of feeling — of love — that I have towards you. And that’s a damn shame.