I was in second grade when Shea was born. I remember I brought her in for show and tell and showed her off to my whole class. I thought she was perfect - she was little and cuddly and adorable - although she had many medical problems from the start, she was born with Cystic Fibrosis. Cystic Fibrosis manifests itself in many ways, some people get really sick in their lungs, some in their digestive system, some people hardly have symptoms at all. I was always really sick with my lungs, infection after infection, hospitalization after hospitalization. I gave my sister infections and we often ended up in the hospital at the same time. She was always very much a momma’s girl and my mom always stayed with us when Shea was hospitalized too. It was nice to have Shea in the hospital with me most of the time though. We shared a room and we could relate to each other. She understood what it was like to be sick even if we didn’t talk about it much. We were psychically there for each other and sometimes that’s all you need. I was diagnosed at three months old and Shea was diagnosed before she was born. I don’t really remember either diagnoses, however, I know my family was told I wouldn’t live past 14. I was told that and knew it most of my childhood, I just never quite believed it.
Shea was seven or eight years younger than me, so we weren’t extremely close. We spent time together in the hospital, but my mom was always there when Shea was. If not my mom, then my grandmother was there, someone most always stayed with us. For the majority of her life Shea had a cast on her leg. She was born with a bow in her leg and broke her leg when she was three months old. They thought she must have broken it kicking her crib. I can still remember my mom holding my little sister sobbing asking if her leg looked weird. It just sort of hung off to the side. Dangled there, lifelessly. Little did we know how much pain that leg would cause. After dozens of surgeries and pins in her leg, they amputated it below the knee when she was eight.
My sister had some favorite things, some things you could always count on her wanting. I remember when my dad came home from the store he always brought us treats. For the life of me I can’t remember my favorites - they changed so often - but Shea always wanted mini M&M’s. She was so funny with it. Anyone who brought them for her would always try to take them out of the bag so quietly, but she would hear and come running! “ca-thunk, ca-thunk,” you’d hear the brace or cast on her leg hit the floor. She was also obsessed with Dr. Pepper, if she heard anyone crack a soda, she wanted a sip. Again, in she would come, “ca-thunk, ca-thunk”! She would hobble in as fast as her cast would let her and ask for her M&M’s and soda.
Shea had some other weird quirks, mostly all she would eat was yogurt and “chicken”. Every meat she ate we had to call chicken, otherwise she wouldn’t eat it. “What kind of chicken is this?” She would ask. “It’s pork chicken,” my mom would reply. “Oh! I like pork chicken!” She would exclaim and we would all chuckle. If we called it just pork, she wouldn’t eat it. She also loved playing Yahtzee, but she was a horrible cheater. If she dropped a dice on the floor, you would pick it up and she would have the other four the same, her sitting there looking as innocent as ever. Shea and I were similar in the way we were really bossy. We both loved to get our own way and thought we were always right. The difference was, I would argue, while she would state it as a fact and that was it and most people just did what she said. Also, she would not do whatever it was she said she wouldn’t, there was no arguments about it. I was also very independent where she really depended on my mom and grandmother. She liked having them around, while I preferred to be alone and do things on my own.
Fast forward a few years after her amputation, one beautiful summer day I was driving down the road to pick up a coworker to go to work. My cellphone rang and it was my mother, she informed me that Shea’s biopsy came back and it was cancerous. A couple of weeks earlier they had realized one of my sisters fibromas had tripled in size over the year since her last imaging. They didn’t know what they could do for it because it was in her nervous system of her left shoulder and the nerves were intertwined with the blood vessels of her heart. They didn’t think they could remove it because she would definitely lose her arm and probably wouldn’t make it through the surgery. My mom told me they were going to try chemo and radiation. She started chemo a few weeks later and she was so sick. Throwing up and nauseous all of the time. She hated it and was miserable. They basically told us it was chemo or nothing. There was nothing else they could do.
Shea’s medical team called a meeting after a few months for all of her staff and family. They told us we could try another round of chemo, but it didn’t do much the first round. My sister said she wasn’t doing anything else. She was done feeling terrible all the time. She seemed stoic, not scared at all. Almost stubborn. My family allowed her to make the decision. The only time I remember us talking about her actually dying was a few days before she really passed away. I asked for a few minutes alone with her, she wasn’t talking much at the time. Just talking made her short of breath. I asked her if she knew what was happening and she nodded her head yes. I asked her if she knew where she was going to go after here, she again nodded her head yes. Where? I asked her, she looked up at the ceiling and pointed. I asked if she was going to heaven, she nodded yes. She seemed so sure, so unquestioning even I believed her.
The day my sister passed away My brother and I went in to see her. I was in dress clothes because I had been out looking for a new job. I had on grey slacks and a maroon top with a green jacket over it. We went in during the day and I remember passing people in the hallway who looked happy. I couldn’t imagine how anyone could look happy when my sister was so sick. I was young and lost in my own grief and didn’t understand how everyone else couldn’t see it flowing out of me. Everyone seemed to know it was my sisters last, she hadn’t been awake for a few days. I remember the nurse coming in and telling my mom, “you can push this button every seven minutes, it will keep her comfortable while slowing down her heart rate. It will speed things up, but it will make sure she doesn’t feel any pain.” I remember thinking, “don’t push that button!” at the same time as thinking, “She has to push that button.” I didn’t know what I would do as a mother.
My brother and I went home in the late afternoon to change into something more comfortable, preparing for a long night. I grabbed my notebook and we headed back to the hospital. The nurses told us sometimes people hold on because of their families, they told us that maybe if each one of us took a moment to say good-bye it would ease her passing. During my turn I just sat their holding her hand and stroking her hair - something she would never let me do if she were awake. I let the tears come, but couldn’t speak words. I felt so weird talking to a body that looked asleep. Like I would disturb her or something. Finally, I leaned over and spoke quietly in her ear. “I will make something of myself, I promise. I will write a book and tell our story, tell your story.” The rest of the evening passed in most the same manor. My dad sitting on one side holding her hand, my mother on the other, holding her other hand. My step dad and mom were also there, my grandmother was there, and my aunt arrived late into the evening. She swooped in a barrel of emotions, afraid she hadn’t gotten there in time. I sat in the corner of the room with my notebook.
At one point my sister let out a large breath and the machines stopped. We all looked up, knowing that was the end. Then she started breathing again, we all laughed quietly. “Well, we know she’s only going to go on her terms. It’s just like her to joke about this too.” She liked to trick people. A couple of years earlier we were at a birthday party for my boyfriends (Elmer) cousin, Elmer and Shea devised a plan to trick everyone at the party. They pretended to have a fight over a hammer and Elmer smashed it on Shea’s foot. Everyone in the room stopped, conversations ceased immediately and the room was silent. Some of the men looked like they were going to kill Elmer. Then my sister started laughing as she pulled her leg off, “it’s fake!” She hollered laughing. I thought it was pretty funny, many of the guests didn’t like our dark sense of humor. Shea liked to do things like that, she tried to make light of her situations. After she started breathing and we all laughed a sigh of relief it wasn’t long before she did take her final breath. I think all of us kind of willed her to take another, but she never did. She passed away in her hospital room surrounded by those of us who loved her most. The tears started flowing freely, if not quietly. We went out and told the nurses she was gone.
A few minutes too late my uncle and aunt arrived with my grandfather. They cried at their tardiness and their lack of deciding to come earlier. I went out to the hall and found a quiet place to sit and write in. I didn’t know what to do. My grandmother and step mother washed my sister and got her ready for.. what? I didn’t understand it. After that the nurses told us we could spend as much time with her body as we wanted. I didn’t want. I wanted my sister back. The sassy little ball of energy she was. I left alone. As I walked out I wondered how other families did it. Did they all walk out together as a tight unit or separately as I was. Alone. Being alone suited my mood just fine. I was dark and sad and a little angry. Why did my family deserve this? Why did my sister?
My sisters passing made me realize that I wasn’t as indestructible as I thought. My body was fragile and I couldn’t be sure I wouldn’t die anymore. I always knew I would die someday, but I thought it would be a day that I chose. Then again, I thought, my sister did choose to die. I was mad that I was born with such an illness. I was upset the only person who understood fully about my disease in my family was gone.