Goodbye, Ronnie.

INTRODUCTION

August 2014

I sit at my computer wondering where my story should begin. Like so many times before, my memories swirl around me like a fly—all moving too quickly for me to be able to stay with one long enough to grab onto it and let it turn into something more purposeful. My fingertips lightly tap at the keys on the keyboard; I know where to begin. I’m just avoiding it. I think what it really boils down to is that what I’m going to write about will reawaken a disquiet, a melancholy, an uncomfortable, a devastation so deep that simply existing in my own skin feels like a tremendous burden. But, I have long thought that in order for things to change, one needs to feel uncomfortable. It’s like the saying goes, we’ll happily, naively, neglectfully let others walk in their shoes that afflict such terrible blisters and pain. But, it’s not until we feel the pain of their blisters, that we decide things ought to be a bit different. And you have to feel it in order to heal it. 

My name is Jessica, and I am a school psychologist for a small school district in Northern California. I work with kids of all ages. I’ve been a school psychologist for almost ten years now and I remember, in graduate school, one of my favorite professors telling me that it takes ten years to become a good school psychologist. I don’t know if I’m any good; that doesn’t really matter because it’s not the point of this story.

In August of 2013, I was told about a new student who would be on my caseload. He was an 11-year-old boy in the fifth grade with some kind of medical condition that would require supervision, and higher level accommodations and modifications in the classroom. When I first learned of Ronnie, this was all I knew about him, though none of this seemed too alarming as we often have kids that come with very specific needs. However, this was all about to change.

What I soon learned about Ronnie was this—he was living with Diffuse Intrinsic Pontine Glioma, or DIPG. DIPG is a rare form of cancer, afflicting about 200-300 people a year in the United States, and mostly children between the ages of 4 and 10. DIPG is a tumor that is located in the most primitive part of the brain-the pons of the brainstem. This also happens to be the part of our brain that is responsible for our automatic functions necessary for survival, such as motor control and ability; heart rate; breathing; swallowing; and consciousness. As DIPG progresses, it slowly takes away each of these functions, one by one, until the only thing left to take is life. DIPG is inoperable, and the treatments available are only intended to slow the growth of the tumor. DIPG has never seen a survival rate over 0%. While primarily a pediatric cancer, in very rare cases, DIPG has also been seen in adults. The average time following a diagnosis of DIPG before succumbing to its devastation is approximately 9-12 months. In exceptional brutality, the only thing DIPG spares is the child’s awareness; the child is fully aware until the very end of what is going on inside his or her body. Ironically, because of its location in the brain, many believe a cure for DIPG to be the pathway to cure all cancers. 

Ronnie was truly spectacular in many ways, one being that he had been living with DIPG for about 7 years. When he was diagnosed at 4-years-old, Ronnie went through a tremendous amount of treatment, and for reasons unknown, his tumor became inactive. It never went away, and he was never in remission, but Ronnie’s tumor stopped growing and he went on living life as a normal, healthy boy. He loved to get into mischief, he loved to read, he loved to dirt bike, he loved to knit and crochet, and he loved fart jokes. He loved life. And absolutely everyone loved him.

Shortly after meeting Ronnie, however, his tumor began to grow again. For many months, we watched his agonizing decline and loss of functions. A family, a school, and a community came together to love this little boy...and then to lose him well before we were ready to let him go, even though we would never be ready to let him go.

In the months before Ronnie passed, I got to know him and his family very well. I spent hours and hours with Ronnie at school, and later, at his house when he was too ill to come to school. I organized fundraisers, I worked to raise awareness, and I did whatever I could to bring some comfort to Ronnie and his family. I grew to love Ronnie and his family very much.

On Monday, January 20, 2014 Ronnie lost his battle to DIPG. A little over a week after he passed away, I found myself paralyzed by grief and trapped in the memories of Ronnie’s last week of life. So, as if under the control of a merciless puppeteer, I just sat down and started writing and crying and didn’t stop until I felt like I could breathe again. Not the deep, cleansing kind of breathing. But instead, the shallow kind of breathing. The kind of breathing that keeps you going on a little longer, but not providing enough air to convince you that you’ll actually survive. 

I really didn’t know the purpose of that writing when I first wrote it, but I feel like I do now. My agenda is simple: I want people to read this and take from it whatever resonates. Whether it's to raise awareness about childhood cancer and DIPG, or to advocate for greater research and funding for DIPG treatments. Or, perhaps what resonates will have nothing to do with DIPG. Maybe, instead, you’ll walk away from this with the reminder that you should simply love and appreciate the people in your life, however perfect or imperfect they are, and the time you have left with them. Do not take for granted that they know the true depths of your feelings. Or, maybe it’s even simpler than that. Maybe you just walk away from this appreciating more, and complaining less. Like I said, however it resonates, that is the purpose. But, as you read, I do want you to get uncomfortable with it. Get upset by it. Shed some tears if you’re so moved. Just please, don’t take a break from it. Don’t put it down until you’ve read it in its entirety. Don’t walk away in ignorant bliss. Feel it and let it change you so that you, yourself, can create change.

Settle in. Here we go.

GOODBYE, RONNE

February, 2014

It’s been said so many times before, and today I shall echo it again. When a child dies, it goes against the natural order of things. It just isn’t supposed to happen. And yet, it does. Everyday. And it is just as awful and terrible and crippling as you would expect it to be. Actually, no. It’s not. It’s much, much worse than you would expect it to be. What Sarin gas does to the body, the death of a child does to the soul. Nothing can prepare you for it, even when you see it coming at you like an asteroid being catapulted into your atmosphere. It will take you down ferociously and without compassion. It will hurt so badly that it feels like your heart and entrails are rotting and exposed on the outside of your body; you only have the energy to drag them behind you as you aimlessly amble about. Your pleas for mercy against this torture will go ignored as you replay his death over and over again in your mind, desperately searching for some loophole to disprove this reality. Your mind simultaneously tries to makes sense of this tragedy while vehemently refusing to accept it. You are in a perpetual and unrelenting fight against a savage and turbulent tide; you never advance to the shoreline. All you can do is recede. You recede further and further back into a darkness so deep and far away that no light can penetrate. It feels like you cannot endure.

Ronnie died on a Monday. But, really, he started the dying process on the Thursday before. Really, Ronnie had been dying for months as his tumor slowly robbed his body of automatic functions necessarily for survival. In fastidious brutality, it spared his awareness. He got to slowly, painfully, degradingly die with the full knowledge and understanding of it. But, the actual end-stage dying process that becomes irreversible once it commences, began on a Thursday. Hospice assessed his vitals: heart rate 120, oxygen 80. Ronnie was not expected to last the night.

Wednesday, the day before, I went to visit Ronnie and his family. When I arrived, Ronnie’s parents (Ron and Jen), his two younger brothers, and Jen’s moms (Linda and Vivian) were there. The windows were all open on this unseasonably warm January afternoon, and the sun poured inside the house drenching everyone in a light, yellow glow. In typical fashion, I was greeted with hugs and kisses from the family before I took my natural place beside Ronnie. With his warm hand in mind, I gazed into those clear eyes. Once crossed from tumor pressure on his optic nerve, Ronnie’s eyes were now fixated straight ahead; apparently, a side effect of around-the-clock morphine. A moment later, Jen was sitting on the side of his bed and we fell into effortless chatter.

Jen’s biological mom, Linda, is a self-taught guitarist. She hadn’t played in years, but she used to strum the tunes of classic rock with the same regularity as the sun rising and setting. For whatever reason, on this particular day, Linda brought along her acoustic guitar. I remember hearing her tune it and thinking nothing of it while Jen and I continued our catching up. But then, all the sudden, the entire room just fell silent as if on cue. Nothing summoned our silence, it was just one of those times when all natural conversation seemed to come to a halt naturally. Had it gone on long enough, it could have felt awkward to go from the low, busy rumbles of conversation to total silence. But this silence was broken as Linda began playing the notes to “Dust in the Wind”; I’ll never forget watching her play. With the sun shining on her like a spotlight, she strummed away with automaticity a tune she had played so many times before with benign intention. But this time, not really realizing until the first notes had already been played, she was performing the song of our hearts and illuminating our sorrow. I looked over at Jen as she quietly stroked Ronnie’s hand and I felt a wave of sadness rise in my throat like a tsunami just before it crests over the seawall. Linda hadn’t played in years, and in what would be our last pardon from heartbreak, she forgot the chords and her hands just fell away from the strings. The room remained silent.

The next day, Thursday, I could not shake that experience. I felt a heaviness in my heart that clung to me in the same way that the moisture of a thick fog permeates your hair, your clothes, and your skin until you can’t get warm no matter what you do. So, I was not entirely surprised when that night I was asked back to Ronnie’s, perhaps this time to bid him his final farewell. 

I was home alone with my daughter, Lily, when I got the summons. My husband, Marc, was at a meeting for school and was not going to be home for several hours. Even though I knew his cell phone would be turned off, I desperately tried to call him over and over again, hoping that he would sense a disturbance in the universe and check his phone, just in case, just this once. When my calls went unanswered, I vehemently blasted half a dozen texts off into the universe that would not be read for hours.

I found myself standing in the kitchen, desperately trying to slow my thoughts, control the violent shaking in my hands, and steady my trembling voice. It was up to me now. I needed to find a way to get to Ronnie’s, and with forced concentration, I found a solution. This solution, however, was a manipulation I was totally ill prepared for. I attempted to convince my small daughter that she was going on an impromptu play date as if that had been the plan all along. She didn’t buy it, not for one second. She knew something was gravely wrong. She could feel my fear and she sensed my sadness, and with something so incredibly terrible on the horizon, why was the person she loved the most leaving her so suddenly? My sweet child, who does not fare well with change, found herself in a spiral of panic and dread.

With crocodile tears streaming down her face, she begged for me to tell her why I was leaving to see Ronnie with such urgency. Her pleas for me to stay ripped at my already breaking heart, so in defeat and fully aware that Lily would see through any dishonest excuse, I relented and tried explaining that Ronnie might not live through the night. I explained that I needed to go because his family needed my help, and because they would be feeling so very sad. It felt like, and was, an act of dazzling brutality. Here is my daughter, crying and devastated, trying to understand how I could leave her in this terrible state of misery to ease the pain and sadness of someone else. Couldn’t I see that she was sad? She asked me how this was fair, for which I had no answer that would suffice. All I could do was try to explain that her sadness would eventually fade away, whereas their pain would never lift from their hearts; they would never be able to cry enough tears to feel better again. And then with that, and a hug, and with Lily still crying but accepting my need to go, I was on my way to Ronnie’s. I felt Lily’s pain in losing me, just as I was starting to feel the pain of losing Ronnie. It was unbearable. 

When I arrived at Ronnie’s, the house was filled with people. Some were friends, some were family; all walks of life were present. Some people were gathered in the kitchen, some were conversing quietly on the couch, and others were huddled around Ronnie’s bed. Above all the chatter was the constant hum of the oxygen machine, interrupted only by the louder and more ominous labored, gurgling breathing of Ronnie. I was told his breathing was called “the death rattle”. For the record, that’s a terrible fucking name.

Just like any other visit, I was greeted with hugs and kisses from the family, but the mood was clearly different tonight. I saw Jen’s other mom, Vivian, and went to give her a hug. We embraced longer than usual, thus causing the lump in my throat to release the tears from their ducts, which had so far been imprisoned and not allowed out. Unable to speak louder than a whisper, I confessed to Vivian the heaviness I had felt in my heart all day long, as if this was somehow the catalyst for the beginning of Ronnie’s end.

In an effort that was as much about comforting me as it was convincing herself that what had been put into motion was going to release Ronnie from his prison, she looked at me with misty eyes and the palms of her hands face up, as if to show me something grand and magical, and she said to me in her bravest voice, “The angels are all around us tonight. That can’t be all bad, now can it?” I just bit my lip and looked away. I tried not to cry. Despite the heat from the nearby fireplace, I remember being so cold that I couldn’t stop shaking.

Suddenly, I found myself standing next to a giant of a man. Enormous and menacing, he was tattooed from head to toe with tribal tattoos. Some tattoos were intricate and beautiful, others were haunting and dark. They illustrated every inch of his visible skin from his hairless scalp, to his cheeks and chin, to his arms, and to his hands. His name was Octavio and we stood silently beside one another for a long time, our contrasting and divergent features somehow seeming to compliment one another. Fitting that it was another example of how Ronnie had a way of uniting the unlikeliest of people.

I was told that Octavio is part of the Pomo Nation. He still visits the Round House and dances and performs Native American chants across the country. He sang for Ronnie several times throughout that night. I later learned that he was summoning the Spirit of the Bear for Ronnie. His chants and songs were intense, and his voice boomed. I oscillated between feelings of awe and fear. Around 11pm, Octavio performed his last chant over Ronnie, then bent over, kissed Ronnie on the forehead, said, “Goodnight, little brother…sleep well” and then dropped a thick stack of hundred dollar bills on his chest before walking out the door, without saying another word, and without looking back. I haven’t seen him since that night. Not in the days that followed. Not at Ronnie’s memorials. Not since his passing. Apparently, I am told, he had just showed up that day. He said something drew him there.

A couple of times throughout the night, it seemed like Ronnie’s time to cross over. We’d all gather around his bed and watch him struggle to breathe; the pauses between breaths extending ten or more seconds. At one point, Jen was lying in bed with Ronnie and I was sitting right next to them at the head of the bed. Ronnie had seemed to slip into a deep sleep. His breathing took a longer than normal pause, and when he didn’t do his usual gasp following the pause in breathing, Jen called his name over, and over, and over again. With a hint of anger - not at him but at the situation - Jen took his face in her panicked hands and turned his face directly to hers and hollered his name with such commanding authority that her voice sounded like the clap of angry thunderheads crashing together in defiance. Ronnie took a giant, rattled breath. This is how it would go on for some time.

After many hours, with Ronnie’s condition remaining delicately stable, people started moving back to the couch, and back to the kitchen. Coffee was brewed and people began conversing with one another again. It was so odd, so surreal. An hour earlier, I was listening to the sobs of parents who were about to watch their child take his last breath. Or, the cries of friends and family who were coming face to face with his imminent demise. And now, I was finding myself sitting with Jen and family and we were laughing. I was listening to stories about Ronnie and the mischief he would get into, like the time he and his brother locked the babysitter out of the house and then proceeded to wreak total havoc for hours, all the while photographing their every misbehavior. Or the times when Jen would take Ronnie shopping at the thrift store and she’d allow him to pick out whatever books he wanted. Every time, she said, he’d come back with a Danielle Steele novel. He liked the covers, she said. I thought about how he could never remember the name of those little mandarins, calling them “Sweet Hearts” instead of “Cuties”. We were getting lost in these happy times, and it was a nice reprieve.

Other times throughout the night, I would find myself huddled together on the couch with Vivian or Grandma Gigi. With our foreheads almost touching as we sat so closely facing one another, we shared the stories of our lives. In some stories, we empathized in our shared experiences. While in other stories, the contrast was so stark that we were unable to relate, but always found a way to care and honor and sympathize. What we were doing, unbeknownst to us at the time, was creating a Venn diagram of our lives with the overlap about to get larger, like a wound opening up. Because by 1am, all of our armor had been stripped away and all that was left was just a raw and vulnerable authenticity that is full of acceptance. I think when people are about to face something together as horrible as a child dying, there just isn’t any room left for judgment. Everyone is defeated equally.

By 3am, most of the visitors had left, and those who hadn’t, had fallen asleep. Ronnie’s dad was sitting alone in the kitchen keeping himself busy by responding to messages on his phone. Jen was lying in the hospital bed with Ronnie, and I was sitting on the couch. Jen was afraid to fall asleep for fear of missing Ronnie’s last breath, even though by this time Ronnie had seemed to fall into a restful and silent slumber. The rattle in his breathing had subsided and he seemed truly comfortable. So, in near darkness, illuminated only by the light of the cartoons from the TV, Jen and I stayed up talking. I don’t know if we had been in this state of waiting and fearing for Ronnie’s passing for so long that self-preservation took over, but all of the sudden it felt more like a slumber party than sitting vigil at a deathbed. Jen and I became fast friends the first time we met, always finding reasons to chat, and tonight was no different. We talked about all sorts of stuff in those dark hours, just like two girlfriends gabbing at a sleepover, each afraid to fall asleep for fear their bra would be put in a freezer...It seems so strange that four days later I would be sitting quietly beside her while she cried in an all too quiet and empty house. But for the next couple of hours, we admitted our strange quirks, we teased one another about embarrassing experiences, and we discussed the lifespan of current celebrity relationships. I had been up for over 24 hours at this point, I had yet to eat dinner, and I was still freezing cold. But, Ronnie had exceeded medical expectations yet again. Our sweet little outlier, Ronnie had made it through the night.

I headed home around 5:30am to get Lily off to school, get an hour or so of sleep, and then back over to Ronnie’s. In fact, each of the following days before his death, I found myself back at his house and would stay for several hours. Miraculously, he seemed to be holding on. His oxygen level had gone back up to 92, his pulse back down to 80. He was more lucid, and for the next couple of days Ronnie’s condition remained unchanged. Not better, but more importantly, not worse. On that Sunday, Jen and I decided to wash his hair. It had grown dirty with residue from so many people running their fingers through his hair. So, ever so gently, we washed and blow-dried his hair while he lay in his hospital bed. His golden locks would soon to return with shiny luster and silky texture. It had grown so long in the months since he lost his ability to walk and sit upright.

A few weeks before this, I had planned a bake sale for Ronnie and was going to make about 1000 cupcakes on that Monday, which happened to fall on Martin Luther King, Jr. Day. After a pretty stable weekend, I was just sure that I’d be able to take leave in the name of fundraising and everything would be okay if I didn’t come for a visit that day. But, on that Monday morning, just as I was getting ready to leave, I got the following text from Jen:

His temp is 105. His pulse is 180. He won’t wake up. He gasps for air every three breaths or so.

The involuntary and biting tremors from four nights ago returned with alarming intensity, and just like that, I was out the door. Something in me knew that this time I’d be returning home a different person than who I was when I’d left; it’s very unsettling to know that and go anyway. I prayed for strength so that I might be able to ease the pain of others. I prayed for mercy so that Ronnie’s suffering might end, and I prayed for this not to be happening…as if I could have all these prayers answered simultaneously. And who, or what, was I even praying to? I wasn’t sure anymore. I was starting to question if I was just a fool who was suckered into a sick practical joke about faith. 

When I got to Ronnie’s, it was deafeningly quiet. The only noises being emitted came from the whir of the oxygen machine and Ronnie’s labored, shallow, intermittent breathing. The crowd of people from four nights ago was gone. Jen had a flat and hollow affect. Ron had his bravest face on, but the defeat could not be concealed. By the time the hospice nurse arrived, it was just Jen, Ron, a close family friend, and myself there with Ronnie. The nurse came in, just as he had so many times before, to confirm news of Ronnie’s decline. But, this time there was no refuting what was happening. Ronnie’s pulse was 183. His oxygen level was down to 59. His fingers were blue, his face ashen. Just like me a few nights earlier, the nurse could only muster out a whisper when he reported, “Probably just a few hours now…” We already knew it, but still, that was the worst thing you could hear anyone say about a child.

Jen crawled into bed with Ronnie, kissed him over and over and kept repeating, “Are you going to be mama’s angel now? It’s okay, baby. I’ll be okay.” And then I saw a single tear fall from her eye and land on the very tip of his nose and I, silently, came undone. Within the next hour, Jen’s moms arrived, as did her brother, and Ronnie’s aunt. For the next two hours, we watched Ronnie struggle to breathe. I spent most of that time counting the seconds between gasps. Five seconds would stretch to seven, to ten, to thirteen. Then, just before 1pm, with Jen in bed with Ronnie, and Ron standing on Ronnie’s other side stroking his hair, Jen silently removed the oxygen from his nose. By the time she brought her gaze back to Ronnie from placing the tubing behind his head, literally no more than a second or two, she simply said, “He’s gone.” And he was. Not another gasp, not another breath was taken. And following suit, his heart had ceased beating, too. I had just watched this sweet, brave, incredible child die. Jen may have been telling him it was okay to go, but until she removed the oxygen, Ronnie must not have felt that he had her permission. The transformation of a body once encapsulated with a spirit to one without is hard to describe, but his sudden absence was present everywhere. It’s an image I can’t get out of my head.

The howls that followed from parents who just lost their child were indescribable, but so devastating that they were also totally unmistakable. It’s a cry so mournful, and so primal, that it strikes you to your very core. It permeates everything in you. It echoes in your eyes and your head and your heart and you cannot escape that sound. It’s the sound of a dying animal that will never be granted the swift or slow mercy of death, but instead left alone to suffer indefinitely. It is, without a doubt, the worst sound you could imagine. If one were to be damned to hell, I imagine in the deepest and darkest corners, in the coldest and dampest pits, one would be left alone to suffer these howls for all eternity. They are that hard to hear.

I went over to Ronnie after he died, picked up his hand, which was still so warm, and held it to my cheek and cried. I leaned over and kissed his cheek and forehead. I could still smell the shampoo from the day before, which happens to be the same kind I use on my own daughter, and this connection felt like a white-hot poker being pushed further into my breaking heart. I whispered to Ronnie that I loved him, that he could rest now, and assured him that his pain was over. Then I just stood back, not sure what to do. Because how do you console the inconsolable? With a loss this profound, what do you do? I still don’t know. I wish someone would tell me. But perhaps some questions just don’t lend themselves to answers. 

I helped Jen clean Ronnie up. We got him out of his diaper and into real clothes again. We smoothed his hair and straightened his blankets. She crawled silently back into bed with Ronnie and closed her eyes. Knowing this would be the last time she would ever be able to cuddle with Ronnie and feel his warmth, I left her to this sacred time and made the appropriate phone calls, each more difficult than the last. I dried my tears, swallowed my feelings, and tried to console those still reeling from what had just transpired. I stood by Ron’s side while the hospice nurse confirmed Ronnie’s death. I assumed duties for Ronnie’s memorial services. I watched with pain and ache as the owner of the local mortuary arrived. All of us hanging on every detail, we listened to what was to come of Ronnie’s body. I forced myself not to look away when Ronnie was placed on the gurney, still wrapped in his favorite quilt, along with his favorite stuffed frog to comfort him. The maroon canvas body bag was left unzipped just enough to keep his face uncovered. Jen and Ron kissed him one last time. And just like that, I watched his spirit and his body be taken away all in the span of an hour. I found myself wondering how people survive this kind of loss everyday. And the answer is, you don’t. You don't survive this kind of loss. You are just as much a casualty to this cancer as Ronnie, just a causality of a different kind. Who you were before is gone; you will never be the same again. You might maintain some minor traits and characteristics of the person you were before you watched this beloved child die. But, be not mistaken. You died, too. The only difference between you and Ronnie is that you are still expected to live.

After Ronnie was taken away, Jen oscillated between the howls and total despondency. She lay in Ronnie’s now vacant hospital bed in the fetal position with her back to everyone. She was the carrion that cancer left behind. No one was talking. The TV was off. For months, I had heard to sound of the oxygen machine and Ronnie’s raspy breathing, and now it was gone. All of it. I don’t know what was worse, the howls or the silence. I couldn’t take it and I couldn’t escape it.

I decided to leave. Jen needed time alone. She was unresponsive in an almost catatonic state…Self preservation, I’m sure. I went over and sat on the side of the bed and told her that, unless she needed anything, I was going to let her have some space and some time. She sat up and gave me a hug, thanked me for being there, and started to cry. Just totally howled in my arms. She was begging for answers I did not have, she was pleading to go with him, she was raging against a God who would take a child. At one point, she asked me to take her to her boys. She wanted to get them and take them to the school that Ronnie used to attend so they could all play. It was, after all, the last place Ronnie ever played. They would play and have a good time and remember how happy Ronnie was at school. When I told her we could do that, but first we needed to tell the boys that Ronnie had passed away, she was soberly returned to reality. Too exhausted to fathom how she was going deliver the news to two little boys that their brother had just died, she simply surrendered. “I can’t. Not now”, and she laid back down after turning on Ronnie’s favorite cartoons. I got up, and walked out. I said my goodbyes to her family, gave loving embraces, and got in the car to head home.

As I drove home, I thought about how far my friendship has evolved with Jen. I met her as the school psychologist and, clearly, we are beyond that now. When you are asked to be present at the birth of a child, it’s quite an honor. New parents are vulnerable and disarmed, but filled with such elation and joy. But, what about being asked to be present at the death of their child? That’s something that binds people together forever. It’s a shared experience more intimate and private and fragile and raw than any birth. And just like that, I was humbled and honored that they would invite me so closely into their lives. The thought took my breath away and I had to pull the car over and cry.

A fool myself, I thought the worst part of this was over. But it was just the beginning. The grief that takes a hold of you doesn’t let go. Grief is a cold and rusted barb that tangles in the meaty tissue of your heart. The more you pull and yank, the more damage it does. But, let it be and it will fester, turning your body and soul into a gangrenous, weeping sore. It is so, so painful.

The day after Ronnie died I had to go to work. I had to deliver the news of his passing to three classrooms. I had to sell cupcakes. I comforted parents and teachers. I prepared a written statement to send home to parents. I packed up Ronnie’s classroom belongings. I answered inquiries about his death and his upcoming memorials. As the unofficial liaison between the school and Ronnie’s family, I could not afford to fall apart, and so I didn’t. And I wouldn't, not for many more days. Later that day, I went to see Jen and Ron. Their sadness and grief were glowing just as brightly and painfully as the day before and the days still to come. 

Weeks later, Jen still pleads for answers that I still didn't have. My sleep is still littered with confusing and upsetting dreams. My own sobbing wakes me up in the middle of the night. I am profoundly disquieted. I can’t concentrate at work, and feel anger at the people around me who seem to be functioning when I am so clearly not. I am enraged at the people who think I am doing okay because either they think I actually am okay and can’t tell that I’m not, or that they think I could get over something so tragic, so quickly, even though it is a conscious and deliberate effort on my part to appear okay. Or worse, those who expect me to be better so quickly after a loss of this magnitude. It is all just so completely wrong.

Ronnie’s services were the weekend that followed his death and they were beautiful. Over 400 people attended the public service, and the chapel was filled for the private service. Wonderful stories and memories were shared, colorful lanterns were released into the sky, and once again the community was united by this sweet and amazing child. I left the services dry-eyed and feeling no sense of closure or relief. So, I sit here now, a hollow and empty shell. At school, I sit alone in my office for hours unable to produce any kind of real work. I avoid friends; I care not for my well being. The only part of my day that I look forward to is when I can go to bed and be alone in the dark. I exist as an excavated apparition among these brightly behaving spirits. I just feel like this goes on and on without end. 

And so, I’m just writing this all down in the hopes that it will release me from these feelings before they swallow me whole. I’m just writing this all down because if it was hard to read, just imagine what it was like to experience, so please have some patience with me if I’m letting you down. I’m just writing this all down because it’s inexcusable that this kind of cancer has never seen a survival rate over 0%. I’m just writing this all down because I can’t focus on anything else. I’m just writing this all down because I don’t know what else to do. I’m just writing this all down because I miss Ronnie so terribly. I’m just writing.