"Who is Sophie?" is a question I get a lot. It's natural for people to be curious about the name I have tattooed on my arm, to wonder who was so important that I had a reminder of them permanently inked on my skin. The following conversation is always a little bit awkward, as I quickly say something along the lines of, "She's my baby sister. She died. But don't worry, it doesn't upset me, it's just part of my life." I rush to get that last sentence out before embarrassment sets in, just as anxious to let them know that they haven't overstepped as they are at the thought of bringing up potentially painful memories. I don't mind these questions; if I did, I wouldn't have my tattoo placed in such an obvious place, a visible reminder of her presence in my life to me and the world at large. And although her loss has left an aching hole in my heart that will never be filled again, what I tell the askers is true. I don't want them to worry. She is a part of my life. And their bringing her up doesn't upset me. I welcome it. Not a day goes by that I don't think about my sister, with or without the reminder from curious parties. It's as natural to me as breathing.
Sophie Olivia was born on March 21, 1994, just two days after my fifth birthday. I was so excited to be a big sister that I was hoping she would be born on my birthday, the perfect birthday present (had that come to pass, I may have regretted it later regardless of whether she lived or died. Sibling rivalry can be hard enough without sharing birthday celebrations). She was born at home, which my mom says was a blessing. It meant we had more than a week to enjoy her presence in a more natural setting, without the doctors and the needles and all the commotion of a hospital. We got to experience the new baby excitement before the anxiety about her condition set in.
I remember pieces of Sophie's first week in great detail. My grandma showed up at my preschool in the middle of the day to pick me up and take me home. I knew as soon as I saw her that my mom must be in labor, and I was uncontrollably excited. We sat downstairs at the dining room table and drew pictures for my parents and my new sibling while my mom was in labor upstairs. I remember bringing the pictures upstairs and hanging them on the wall above my parents' bed (you can see them in the photos of our family from Sophie's birth). Shortly after she was born, I changed into my favorite outfit to celebrate the occasion - a blue velour dress, white tights studded with pink hearts, frilly white socks, and my "ruby slippers" (a pair of red, glittery Mary Janes, the height of fashion to a five year old) - and there are numerous photos of me dressed to the nines, beaming down at my new baby sister. I remember reading pictures books to Sophie, sometimes making up stories for the ones that had no words, and drawing more pictures for her while she sat in her blue baby chair. I remember going to the doctor's office (probably when we first discovered her heart murmur, though I didn't realize it at the time) and how Sophie managed to lose one of her socks along the way, a recurring habit of hers.
Now for some (oversimplified) medical jargon. Sophie was born with a heart defect called aortic stenosis, meaning the valve that carried the blood from her heart into her aorta wasn't fully opened. Once it was diagnosed, she was scheduled for a balloon valvuloplasty, a procedure in which a balloon is inserted into her heart and inflated to open the valve. It's the recommended procedure for infants, as it's less invasive than surgery and has a high survival rate. However, during Sophie's operation the pin that was holding the balloon slipped and punctured her heart, and, despite the doctors' best efforts and an emergency open heart surgery, she died on the operating table on March 31, 1994.
I don't remember most of that. All my knowledge of the medical details was picked up in bits and pieces as I got older. What little I remember of the last few days of Sophie's life is fragmented. I have vague recollections of visiting her and my mom in the hospital the day before her surgery. I wasn't really sure what to think, as I'd never been to a hospital before. It seemed scary but everyone assured me that things would be okay, so I kissed them both goodbye and accompanied my dad home. The next day, I was taken to my grandparents' house so my dad could join my mom at the hospital. This part I remember vividly. We sat around watching movies, and the tension in the room was palpable. Even if I wasn't nervous, I could tell that the adults were. I was watching Fantasia when my parents returned from the hospital. It was the scene with the dinosaurs, which always terrified me, but I was determined to watch it because on some level I thought it would prove my bravery and that would somehow make the surgery go alright. My parents asked me to come into the other room to talk to them, and I threw a tantrum because I wanted to keep watching the movie. They took me aside anyway, and I suddenly noticed that someone was missing. Everything went into slow motion as, in my grandparents' family room, they told me my sister had died, and my tears transformed from angry-bratty-child tears into heartbroken sobs.
This wasn't my first encounter with death, so I understood what was happening right away, at least as much as a five year old can understand something like that. A few years earlier, we had put our old dog to sleep, so I knew that when my parents told me Sophie had died that it meant she wasn't coming back. What I didn't know was how profoundly the experience would shape my life. Emotionally, I felt like I moved on fairly quickly. After all, just because I understood what death meant doesn't mean I understood how it affected me. I remember crying at her memorial service and again when we got her ashes back and placed them in the beautiful urn decorated with crocuses that my parents had gotten made for her, but apart from that I moved on to whatever issues typically occupy a five year old's mind. Still, I missed my sister, and she was always present in the back of my mind. I imagined playing with her, and when I woke up in the middle of the night after a bad nightmare, I told myself she was there, watching over me.
Whether these were the figments of a grieving child's imagination or something more mysterious is a matter of personal opinion and something each person must decide for themselves based on their own beliefs about these sorts of things. What I can tell you is that this was far from the first or last time that people felt Sophie's presence around them or sensed something a bit otherworldly about her. My mom details the strange occurrences that happened during Sophie's ten days of life in a piece she wrote and performed for a production called Listen to Your Mother in 2011 - errant thoughts about Sophie's impending death that seemed to come out of nowhere, Sophie's lack of a "new baby smell", a time when she did the physically impossible and lifted her head to kiss my dad on the lips while he and my mom watched in shock. I, too, remember Sophie having distinctly non-infant-like qualities, such as an intense focus on the world around her, to the point where she would stare transfixed while I read to her and drew pictures for her and would begin to scream if I stopped. I also recall a story about my cousin having a dream that she died and rushing to the hospital so he could meet her before her operation, and my mom has spoken about dreaming of "old souls" welcoming Sophie back into their circle while waiting outside the operating room during her surgery. It has long been the opinion of my family that these were messages from Sophie that she was not long for this world and that her time with us was meant to be short.
We continued to receive messages like these following her death. Soon after she had died, a close friend of my mom's was writing a piece about Sophie, and when she ran it through spell check the only suggestion for Sophie's name that came up was "safe", a phenomena that has never happened again to our knowledge. Our family also began finding small hearts in odd places, starting with metallic heart-shaped confetti that somehow found its way into our house now and again despite the fact that none of us had come into contact with it or had a stash of it in our art supplies or anything of that nature. It was not uncommon to find a small pink or red heart glinting up at you from the floor with no indication as to where it had come from. Soon it expanded beyond confetti, as we began noticing puddles, stones, and knots in tree trunks shaped like hearts wherever we went. Just last year, my mom was visiting me and as we were walking through Fort Tryon Park I found a purple plastic heart-shaped jewel, the kind you'd find in a child's princess kit, sitting directly in our path, and this January I found a large silver heart on the ground in front of me as I exited the Western Wall in Jerusalem. It wasn't just hearts, either. Throughout my childhood I would often feel a light touch on my shoulder while I was alone, and recent conversations with my younger sister have revealed that she, too, has often felt like someone is watching over her as well. Some days the presence is stronger than others. On Sophie's birthday a few years back the shower curtain kept billowing in and wrapping itself around me while I was trying to take a shower despite the fact that both the window and door were closed. It wasn't until I murmured, "Hi, Sophie," that it fell still and I was able to finish bathing. That same day, my mom posted a photo of a rainbow from a suncatcher in our living room positioned directly above the shelf where we keep Sophie's ashes, photos, and other mementos of her.
Many people may call these coincidences or wishful thinking. That's fine, we are all entitled to our beliefs and interpretations of the world. But to me, these have always been signs that Sophie is still with us, checking in with us and letting us know that she is alright and she loves us. At this point, her spiritual presence has been with me far, far longer than her physical form, and most days I am content with the knowledge that my middle sister is, for lack of a better word, my guardian angel. But some days - her birthday, the anniversary of her death, the rare occasions I get to visit her memorial, or random moments when her loss hits me out of nowhere - it doesn't feel like enough, and my chest aches with the fierceness of how much I miss my baby sister. And always, always I spend the ten days from March 21 to March 31 observing her presence in the world, her life and death, and the mark she left on me.
In the words of one of my favorite musicians, Johnny Clegg, "It's funny how those once so close and now gone still so affect our lives." Sophie gave me the gift of becoming a big sister, a role I am grateful to have been able to continue fulfilling for our younger sister Grace, and there will never be a time when she is not a part of me. Gaining and losing a sister left me irreparably changed in ways that are still beyond my understanding, but as strange as it sounds I wouldn't have it any other way. And when strangers ask who Sophie is, I smile, because each time they speak her name it's proof that she is still a part of this world and still a part of me.