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Our Story

Updated: Jan 10, 2020

In The Before, we were a happy family of five—myself, my husband, our oldest daughter who had just turned 20, Evelyn who was only weeks away from going away to college, and our son who had finished his first year of high school. The Before is what I call the life we had prior to Evelyn's passing. It was fraught with its own challenges, but if we had anything going in our favor, it was each other. It was that as a family, we excelled. We loved and adored each other unabashedly. Nathan and I were that rare lucky breed of parent whose adolescent children actually wanted to spend time with them. We often had people remark upon the maturity of our children, how well they all got along, how happy we seemed together. Being a family, being us, that came easy. And whatever difficulties we had faced in the other arenas of our lives—career, school, money—in that summer we believed we were finally moving past them.

I don't recall when her heart palpitations started exactly, but it seemed they had been with us already for some time. Months, at least. Maybe a year or more. At first, they were so few and far between they were hardly noticed. She might mention it in passing, and then it would drop from our consciousness as weeks or more went by uneventful. It's hard for me to say, even now, how frequent they became. I'm not sure she told us on every occasion. She was a busy, bustling teenage girl. She wasn't overly concerned, and neither were we.

Somewhere along the way, the lightheaded spells kicked in—moments where she would pause after rising from a chair or coming down the stairs until it passed. These were seconds or fractions thereof in length. They did not occur at the same time as the palpitations, and we didn't truly draw the connection until she was gone. In between, nothing changed. She was happy, healthy, active. She helped us install a stove, paint our deck, carry a loveseat and sofa up the stairs. She drove and worked and hung out with friends. She stayed up late. She ice skated. She rode her bike. She never appeared sick.

It is here that I should stop and tell you my husband and I both suffered with heart palpitations and hypotension for decades. Mine began in my teens, my husband's in his twenties. Beats that skip like a stone across the surface of the water were a regular occurrence in our house. Standing and having to pause until the blackness dissipates was not uncommon. When Evelyn began to mention her symptoms, we reassured her it was genetic, but, as with us, it was ultimately no cause for concern. In the wake of her loss, cardiologists confirmed that my husband and I both experience "ectopic beats", a benign condition that can sometimes be controlled with beta blockers, but most often is just something one lives with. How does one tell one palpitation from another? How is one determined deadly but another innocuous?

Three months prior to her death, she had her first real scare. An episode of sleep paralysis that left her weak and unable to see for moments upon waking. It had only happened once before, and it terrified her. She tried to go to school that morning, but I was called to come and pick her up. We set a doctor appointment that afternoon. Her checkup proved reassuring. The doctor listened to our description of everything she had been experiencing, and then listened to her heart. She assured us Evelyn had nothing to fear. She was absolutely well, just a little underweight. Her heart sounded fine and, in her words, "a cardiologist would be a waste of our time and money." She attributed the palpitations and dizzy spells to stress, dehydration, and a lack of calories. The sleep paralysis was unconnected. She ordered blood tests and a sleep study and sent us home smiling and confident.

The blood tests came back normal, the sleep study never happened. We wrangled for weeks with the company who monitors the equipment and our insurance, only to meet with a dead end. Instead, we did our own research on sleep paralysis—an uncomfortable but harmless condition that, to be fair, had only occurred twice in Evelyn's experience. We decided a study was unwarranted. What could they do for it anyway? What were the odds it would even happen on the night she wore the equipment? I will regret this missed opportunity for the rest of my life.

Three months later and two days before Evelyn died she had a physical for college. A completely different doctor listened to her heart this time. A completely different doctor declared her perfectly healthy and fit to go away to school, to participate in sports if she wanted, to travel. They gave her two immunizations that were required for her to live on campus, signed the necessary forms, and sent her home to start packing. That night she told me her dizzy spells were worse. We decided to take her back to the doctor, to insist this time on a referral to a specialist. After all, I didn't want her passing out on campus. She could hit her head on the concrete. She could be seriously injured. These were chief among my concerns. The possibility of her death never occurred to me. I didn't know it was possible for children to die the way she ultimately did. I'd read stories about kids dropping suddenly on the basketball court or practicing for whatever sports team they were on, but Evelyn was nothing like those kids. She didn't exhibit the listed precautionary symptoms. She didn't faint or experience shortness of breath. She had no chest pain or fatigue. She ran fast and worked hard and lifted heavy objects and did all manner of things without ever triggering a single symptom. And we had taken her to the doctor who listened to her heart and would have heard if there was something wrong. Right?

I worked the next day and came home tired with a blog post yet to write. I stayed up late to complete it. I remember my girls coming down the stairs full to bursting with laughter. I remember squeezing Evelyn's hand, calling her "my love". I remember her smile and silliness. I remember laughing at them both. She'd had a good day hanging out with her sister, spending precious time together before she had to leave. She'd felt well and had fun. Was she wearing the new pajamas I got her? What time had it been at that moment when I last touched her alive? They retreated back upstairs to watch more of the anime they were into at the time. I made my way to bed. I was off the next day. I resolved to call the doctor and schedule her appointment.

The first time I went up to her room, it was around 8:30 in the morning. I didn't usually go up there to wake her so early, but we had a friend coming to stay with us, and I needed help cleaning the upstairs. Her door was closed and she didn't respond. I recalled the antics of her and her sister the night before. I smiled thinking they'd probably been up late. I would leave her to sleep a bit longer. I would busy myself with a video I needed to record for a class I was teaching soon.

When I went up again, it was 10:48. I know because I passed the clock on the oven on my way to the stairs. I knocked again and she didn't respond. Usually, if I wanted to wake Evelyn, all I had to do was knock. I opened her door and called to her. I could see her laying there, sleeping in her bed across the room. I said her name a couple of times and she didn't wake, didn't speak, didn't turn over. The shade was pulled and it was fairly dark, but I could make out a shadow across her cheek that shouldn't be there. I didn't understand what I was seeing. My brain attributed it to acne though she had none at the time. I walked to the bed and tapped her foot good-naturedly. I must have said something like, "Come on, sweetie. Get up." But I don't know. I can't remember because all I can remember about that moment was how cold her foot was. It didn't feel right, like the shadow, like the quiet. But feet are cold sometimes, and I still did not connect the dots. I moved up to her back and placed a hand there to jostle her awake. The coldness in her back was unmistakable. That's when the first alarms began to really sound in my mind. We take the warmth of living flesh for granted. We are so used to feeling it that we only ever notice it when it is absent. And it is only ever absent in death.

I grabbed her arm and shook her but she was frozen. I rolled her over and can recall with perfect clarity how her arm came up with the rest of her, holding the position she'd been sleeping in, stiff as carved wood. And then I saw her face. The colors were all wrong. The side against her pillow was white as alabaster, even her lips. But the other side was an uneven purple like a bruise. Her mouth was open just a little, and her eyes even less. My Evelyn slept with her eyes slightly open since she was a very little girl. Through the slits I could see the dull gray of her normally blue iris. I could see clouding and what can only be described as flatness, the complete lack of presence.

Screaming. I remember the screaming. It was mine but also it wasn't. I had no connection to it, to my own body, to the scene in front of me. I had the thought that I was in a horror film because somehow it was easier for my brain to believe I had found my way onto a horror set than to believe I had found my child dead. And then I ran.

I shot like cannon fire out of that room and started shouting my son's name, the only other person in the house with us that morning. He was already opening his door. My screaming had woken him and as he put it, "It was too intense to be a bug or something like that." I remember the hair falling around his face as he stood in his doorway and I blurted, "Your sister's dead!" I remember seeing the shock drop over him like a wet blanket. I remember the stammer in his voice and his trembling hands. And I remember saying, to a fifteen-year-old boy, "You have to help me. I don't know what to do."

I can't say when the crying started, only that it must have been while I was screaming, but I didn't realize it until the 9-1-1 operator told me I had to stop and calm down because she couldn't understand me. I was back in Evelyn's room, leaning over her, stroking her hair and her skin with one hand while I held the phone with the other. I told them, "It's too late, she's already gone. I know she's already gone," over and over. And still I had to sit through the routine questioning. Was she breathing? No. Was she responding? No. Was she blue? No. On and on it went. I kept saying, "She's cold. She's so cold. And she's stiff." The operator asked if I wanted to stay on the line, but I said I needed to call my husband.

I stood outside her room clutching my son as I dialed my husband's number. That conversation is blurry still, but I remember saying to him, "It's really bad. It's so bad." And I remember feeling like telling him may as well be driving a knife into his heart. And I remember thinking maybe it was wrong to do it this way—by phone while he's at work. But then, how? How does one tell the love of their life that their beautiful child has died? At least I made sure he wasn't driving first.

It seems odd to me now that we didn't stay on the phone together. I kept trying to reach my daughter at work, so maybe that's why we hung up. Or maybe it was the knock when the paramedics arrived. I know I let them in and led them to her room. I know I stood at her side when the first responder came in, took one look, and stopped the rest of the team. I heard the word "lividity" and I will never forget it. I saw him turn to me, heard him say, "I'm so sorry." And that's when I fell. I fell into another paramedic standing next to me. He must have caught me. He must have gotten me down the stairs. I spent most of the rest of the day on our living room sofa, clutching my son, answering questions and calls. We weren't allowed back in her room. When the medical examiner finally arrived, I had to ask permission to see her one last time.

There are things I cannot always place correctly, but will never forget. Taking a picture of her before the paramedics arrived—somehow knowing she might be taken from me and I would not get her back. Calling my aunt—she must have said the word no fifty times before it sunk in. Seeing the blue and red emergency lights flashing through my entry. Seeing them carry her down the stairs in a bag. Sitting with my daughter out in the grass as she called Evelyn's girlfriend and best friend to tell them the worst news ever. Her rocking, her crying, and the rain falling on us. Stripping Evelyn's bed upstairs after they took her away. How much my head hurt and not giving a damn. Eating a banana—the only food I was able to get down that day. The feeling of hating everything around me, every stick of furniture, every knick-knack, every useless item. Telling the cops and paramedics over and over, "She was such a good girl. She was such a good girl." Taking her necklace from her room and putting it on—I have worn it every day since. The feeling of complete revulsion, of wanting to run from life. My husband crying against the wall. The four of us in a circle, holding one another.

We are still in that circle, still holding on to each other for dear life. I hated everything around me for a long time. As though it had all betrayed me, that it had somehow let her die, failed to tell me what was coming. I don't blame inanimate objects anymore. I mostly blame myself, and that is something I will be working on for years to come, probably forever. Some days, I am too numb to be repulsed. Other days, I find that there is still beauty in the world, still love, still reasons to appreciate life, though it only seems to deepen the sadness, and I must accept the two side by side. And still I face the days where I want to run from life as fast as possible. My desire to be here is shattered, and it is only the love for my remaining children and a willpower I will never understand and halfway resent that keep me going.

In the weeks and months that have strung together this first year without her, we have all been through every test imaginable to determine if we are at risk for whatever took our beautiful girl's life. Evelyn's autopsy was inconclusive. By all appearances, she looked absolutely well and healthy. Evelyn's DNA as well as ours is now part of research. It could be another year before we find out if a mutation responsible for her death is discovered. She tested negative for all known variants that cause sudden death. Her symptoms have led us and the heart rhythm team at Texas Children's to believe she suffered from a channelopathy, a heart rhythm disorder that can lead to fatal arrhythmias. We have been warned that it is entirely possible she had one that has not been discovered yet.

We still sleep together in one room as a family. In the early months, I woke often to check everyone's breathing in the night. It happens less and less now, and yet we don't feel ready to sleep apart. Labels like PTSD, complicated grief, and major depressive disorder are now a regular part of our routine—flashbacks, nightmares, hyperarousal, dissociation, panic, triggers. We contend with these daily. Our schedules look different now. We spend more time at home, together. My son is homeschooled, my daughter taking online courses. There is counseling and support groups to attend. Our inner circle has shifted in ways that are both painful and comforting. People we loved and counted on continue to fall away. People who share our pain or a remarkable gift for empathy continue to arrive.

I still cry every day. I avoid the upstairs—we all do. Some days I feel imprisoned in this house, and others I can't imagine leaving the last place I shared with her. At first, I couldn't imagine a future for myself at all. Now, my picture of the future is very different than it might have been in The Before. Some pieces have been swapped out entirely, traded for a better fit, what suits this new, broken version of myself. Others are backed by reasons a world apart from the original ones. Slowly, I am reconstructing my shattered beliefs around this unthinkable experience. As I recently told someone, faith looks different on the other side of loss like this. I cannot be who I was or believe as I did. But with Evelyn's help from the other side, a story for another post, I am beginning to believe again.

I dread the next 11 days, reliving our final hours together and our first hours apart. This has been a year of torment and excruciating pain. And that doesn't magically change after the first anniversary of her death. I am not so naive anymore as to think so. My therapist and I talk in terms of "pain management". We understand this grief as "terminal". When there is no hope for cure, you change your focus to comfort. What will make the next one, or ten, or twenty years more bearable? Bearable enough that I can stand to stay, to keep breathing, to keep being? I can't answer this completely yet, but I have a few ideas.

I wanted you to know our story, though it has taken me a year to write it. I wanted you to understand how we could miss "the signs", how very mild and nonthreatening they were. How very unexpected and shocking her end. I will spend my remaining years recounting these very details to myself, trying to unload the mantle of shame and guilt and responsibility that weigh me down each and every day, trying to earn my own forgiveness. Even now, my heart is leaping like a rabbit in my chest, reminding me of how easy it is to be wrong, reminding me that this devastating loss is not without its physical toll as well. My own palpitations have taken on a life of their own since Evelyn died. The anxiety and depression I knew in The Before seem as docile as a kitten by comparison to what I experience now. But there is resiliency. And hope—a four-letter word I never thought I could speak again without the urge to vomit afterward. There is strength. And beauty—something I couldn't see for many, many months and sometimes still must strive to. There is compassion. And awe—the witness that though it is not as I once believed it to be, mystery and magic still present themselves to me now and again. And for all the pain, there is still love. Because we are, forever and always, the five of us together, one heart.

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