Author: stein28

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Thanksgiving

It is the morning after Thanksgiving and I am sitting in an unfamiliar home, in a different state, but with wonderful friends. David and I were adamant that we did not wish to have a Thanksgiving that remotely resembled previous Thanksgivings, where Ariella’s absence would be glaring. Her absence is always felt, yes, but she is not obviously missing from this tableau since she has never been in this setting, or even with these friends. She would not be expected to be here. And this Thanksgiving was quite different from those in the past and until dinner, it didn’t even feel like a holiday. Had we been at home I would have been cooking all day with the parade and then the dog show on in the background, and Ariella would have taken care to nicely set the table and write the menu on her dry erase board. Yesterday was nothing like that. We traveled and spent time with good friends, eating, drinking and just being together. And it was a relief. But the traveling. There is not much else to do during a more than five hour drive than to think. And imagine all the games we played on road trips with Ariella (the alphabet game, I Spy, License plates). And reminisce. And contemplate “what if?”. And consider what we should be or would be doing rather than what we are doing.

David’s college friends, now a married couple, graciously invited us to spend Thanksgiving with them in Cleveland. And we jumped at the chance to get out of town. They don’t have children and it is almost freeing to be away, with no obligations, doing something completely different. Up until we sat down for dinner, the day felt just like any other day, visiting with good friends. But dinner still just didn’t feel right. The place was different, the people were different, but it was still a Thanksgiving meal. Which should be shared with our daughter. It’s hard to feel thankful when your family has been shattered. But there are some things I am grateful for. I am grateful for good friends like the ones we are currently with. I am grateful for the friends and family that continue to check on us. Especially those that weren’t close friends prior to the tragedy. It’s those that reach out after something horrible happens, even if they are mere acquaintances, that truly care, that truly mean it. Because they don’t have to. They do not feel obligated to. But they choose to. Which is extra special because interacting with a grieving parent is not always easy. It can be awkward and uncomfortable and yet people choose to be there. And there have been quite a few that continue to check in, and just want us to know they are thinking about us. Thank you to everyone who sent messages yesterday. It means a lot.

We are now back in the car for a four hour drive to Michigan where we will meet up with more of David’s college friends and go to the Maryland v. Michigan State football game (I went to Maryland, the others went to Michigan State). It’s going to be cold and rainy, but once again with good friends. I sometimes wish I could just stay in a place where Ariella never was because I could almost pretend that we are just away for a little while, to one day return to normal life. I am not reminded of her with every walk down the hallway, every route we take driving, every store we see. But then again, I take comfort in being around Ariella’s things, being able to go into her room, cuddle with stuffed animals she once cuddled with, touch things she once touched.

I feel like I am not fully participating. I’m watching myself interact, make conversation but I’m actually not really doing too much of that. I’ve been pretty quiet. Silently observing. Not fully taking part. I’m physically here but my mind and my heart are elsewhere. I’ve had moments of laughter, though they are rare. I’m glad I’m here, with David and good friends but I’m also not really here. The change of scenery and company is good. But I also long for the peace of my own home. But what I really want I can’t have and there is not anything that can make that okay. The change in routine, change in location somewhat distracts, but also makes me long for the familiar.

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Unfathomable

I can’t. I can’t. I can’t do this. I can’t live like this. This life. This existence. I don’t want it. It’s horrific. It’s lonely and painful and desolate. It’s numbness and shock and confinement. The pain is overwhelming, it threatens to suffocate me. My arms ache to hold my girl. There are times the pain is so immense that I literally pull my hair, scratch at my skin, anything to try to detract from the anguish. I scream from the top of my lungs. Wail and cry and beg G-d to take my pain away. But nothing comes close to offering any kind of release. It builds up and builds up and builds up but has no place to go.

I don’t write as frequently as I used to. It’s not because I don’t have anything to say. These feelings, this heartache, hasn’t gone anywhere. I have plenty to say. But it’s all the same. Nothing has changed. The darkness still envelopes me. I still cry every day, multiple times a day. I still have visions of driving my car off the side of the JFX or slamming into a tree at full speed. I would never actually follow through but the thoughts plague my mind whenever I am at the wheel of my car. I still count the minutes until I can reasonably go to bed because sleep is the only escape from this nightmare. I can’t be silly, frivolous. I’m no fun anymore. I am in a constant state of sorrow. Joking around, having a good time, making small talk, being carefree, are all foreign to me. I go out, I see people, but there is no true enjoyment. I function. I exercise. I go to work. I cook dinner. I get out of the house. But there is no pleasure in any of it. This is a life sentence. Decades. I have decades of this. It is crushing and soul sucking.

Memories flutter through my mind. Brief movies of our all too short time together. Ariella as a newborn with her full head of dark hair and her daddy’s mouth. Crying whenever she was put down. Ariella as a toddler, wearing my boots and carrying my purse through the house. Visiting Ariella in school during American Education Week. Seeing her in a world that was usually her own. One that we did not get to witness very often. She had her own life in school. A life with her teachers and friends that we didn’t know much about. Playing soccer, doing gymnastics, and shining on stage when she started to dance. So many memories. So many. But not nearly enough. There will never be enough. When those memories dance through my thoughts I find myself in complete disbelief. This is my life now. I am living in a constant state of disbelief. I cannot believe that that little girl flooding my mind is no longer here. I cannot fathom that our lives turned out this way. I always felt so very lucky. Life came easily. Bad things, truly bad things, didn’t happen to us. Even when Ariella was diagnosed I thought nothing worse could happen. We would have a horrible year but in the end she would be just fine. Because nothing bad happens to us. And now I can’t imagine anything working in my favor again. And yet I still can’t believe it. When I’m cooking dinner I can’t believe she’s not in the next room doing her homework. When I’m getting ready for bad I can’t believe that my night won’t end without reading with Ariella. When I’m driving home from work I can’t believe that I don’t have to stop on the way home to pick her up from school. There is so much unbelievable about this and yet it happened. It’s real. A life sentence, as I mentioned, when I would much rather be sentenced to death.

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My Story

When thinking of the story of my life I never thought this was how it would turn out. Sad and desolate, filled with heartache and anguish. Every sad story needs a hero but that is certainly not me. I am no hero and nor do I wish to be one. I can barely save myself much less help others. I am angry that I couldn’t be the hero. That I couldn’t save my daughter. In a story about families the parents are supposed to be the heroes. They are supposed to save their children, protect them from harm. But no heroic action on my part could save Ariella. I could not when it was most necessary, fulfill my role as a mother.

My daughter is the real hero. She is light, she is grace, she is my savior. But she is no longer here. She is the hero that paid the ultimate sacrifice for the battle that she did not choose. It chose her. Her story defines my story, from the day she was born. I was no longer just a wife, just an occupational therapist, just whatever. I was a mom. My most important and meaningful role. My life and story was forever changed where I went from the main character to a supporting role. My daughter had, and still has, the leading role in the story of my life. Now more than ever since I feel her absence everywhere.

This story is no fairytale. It is a horror story with twists and turns and suspense. The nightmare began when Ariella was diagnosed and since that time there have been many plot twists with unexpected hospital stays, achieving remission, relapsing, setbacks, and progress. We never knew where the story would take us, what scans would show, what the next steps were, how it would end. I wish I could go back to not knowing how it would end. I wish it was one of those choose your adventure stories because any other ending has to be better than the ending we got.

But unfortunately for me my story did not end there. My life did; my meaning, my purpose, but physically, my story goes on. Collateral damage left in the wake of destruction. I am not the hero in this story. I am not doing anything heroic. I am not inspiring, the epitome of strength, someone to look up to. I breathe because it is an involuntary function. My heart beats, also against my will.

My story took a dark turn, led me into a black, twisty, labyrinth with no way out. The true heroes of my story are present. The ones who have been there, who are not scared, who don’t turn away from the demons haunting me. They try to lead me through the paths, to the light but no matter which direction I turn, I keep hitting dead ends. Sometimes I feel like I am making progress, finding my way through, the path ahead looks clear but then out of nowhere, a wall. A dead end. This wall, this barrier, doesn’t just stop me from moving forward, but actually pushes me back. I feel trapped, lost, confused, have no idea which way the path will take me. But after some time with my heroes present I pick myself up and try a new path. A new direction towards survival. And so I slowly start again. One foot in front of the other, slogging through the mud. Breath by breath, heartbeat by heartbeat. But then another wall, another obstacle, something else keeping me trapped in this maze. It is maddening. It is infuriating. And so incredibly frustrating. I feel so lost, so confused. Turned upside-down and inside-out. What’s up is down and what’s left is right. I don’t know which way to turn. And when I’m sure about the direction I choose, it turns out to be wrong. I’m beginning to think there is no right path. That there is no way out of this web. That I am doomed to spin in circles with no relief, no way back into the light.

I used to think we wrote our own stories. That our future was in our own hands. In a cruel twist of fate I learned that we really have no control over our destiny. How naive I was. It remains to be seen how my story continues and ultimately ends. I just wish it was sooner rather than later.

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Six Months

Six months. It’s been six months without our beautiful spark of light. Six long months of tears and anguish and longing and heartache. Six months without our ray of sunshine lighting up the world. Six months of darkness and despair. Living as a shadow of my formal self. Six months that feels like an eternity. Day in and day out of just barely surviving, just going through the motions, putting on a front for the world to see. I am a very different person than how the world views me. I want to scream, daily, wherever I am, that my daughter died, that I’m not normal, that I’m not okay, that I’m just faking it. That this life is just so meaningless. I want to interrupt conversations, tell them that none of it matters. Whatever they are complaining about is nothing compared to the turmoil brewing in me. But everyone has their own shit.

Six months and nothing really has changed. I didn’t expect it to. Though it feels like a lifetime six months is really no time at all. The pain is just as acute, the yearning just as intense. I miss Ariella more now, though, and each day I miss her more than the day prior. Because that’s just one more day without her. One day further from feeling her arms around me, hearing her voice, feeling her warmth, hearing her laugh. I miss her so very much, all the times we had and all the memories we will never get to make. I have gone back to work, I guess that changed. But that’s not by choice. As much as I don’t want it to, life has to go on, the bills must be paid, groceries must be bought. The world didn’t stop spinning so I have no choice but to work.

In six months we got a dog, refinished our floors, and redid our kitchen. Ari’s Bears became a 501 (c)(3). We cried through spring, trudged along through summer, and are now in the midst of fall, what once used to be my favorite season but now just fills me with angst. We have taken two trips. Kids have finished school, gone to camp and started school once again, families have been on vacation and back, a quarter of the school year is complete and sports and activities are well underway. The world continues.

But really, for me, everything is the same. I beg G-d daily to be reunited with Ariella. I would much prefer to lie in bed all day than to face life. Work serves as a distraction but I don’t want to be distracted. And it’s not enough of a distraction anyway. Ariella is always on my mind regardless of what I am doing. I want to have the freedom to be this new version of myself all the time. I want to hide away from the world, cry whenever I want, scream when I feel the need. I can’t do that at work. I can’t do that anyplace but my car or at home. I’m drained and exhausted. I can’t bear this. And this is just the beginning. There is a long, dark and windy road ahead.

Six months is just a drop in the bucket of what we are facing. How do people survive this? It doesn’t feel survivable. I know people do survive. I’ve met people surviving. But what’s the point? I just don’t see the point in anything anymore. I’d rather not have a life at all than the life I now have to live.

I don’t like to compare grief. Loss is loss and I can only compare my own experiences of grief. I’ve experienced a good bit of loss in my life even before now. My friend died in high school, as did an acquaintance and a couple others in college. Out of order deaths. Completely nonsensical. Grandparents and great-grandparents while sad are expected. We know no one lives forever. An (ex)aunt and just 7 months later her husband. In between that time my dad. All three died before their time. Not super young but certainly not old. My friends’ deaths made me question everything. Children, teens are not supposed to die. A teen/young adult should not have been to funerals of 3 friends before the age of 21. I was devastated but life goes on, we pick up the pieces and continue to live. When my dad died I thought that was one of the worst losses I would ever experience. I couldn’t imagine experiencing anything more devastating. Little did I know just a year later we would be facing our daughter’s mortality and in 3 years the most heartrending, shattering loss a person can experience. Because nothing, no loss compares to the death of a child. Six months after my dad’s death I was living. I was able to function, enjoy life, experience happiness. I missed him (and still do) immensely but my world didn’t stop. Six months after Ariella’s death and even the thought of being happy eludes me. I can’t imagine a time when I might actually want to live rather than just survive, when I might experience bouts of joy. Six months is the blink of an eye. Six months is an eternity.

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Remembrance

David and I went to a remembrance ceremony last night. It was at the hospital where Ariella had most of her treatment. You may be wondering how I could go to the hospital after my last post. I have actually been to the hospital a couple of times since Ariella died (before visiting the person the other day) to give out bears and it was okay. I’m not sure why the difference but it was being in the hospital room that was the trigger for me. This ceremony was held in a different building from the main hospital. We had been in this room before, for a party, but it wasn’t the same trigger as being in the cold, sterile, clinical, hospital room.

The ceremony was to honor children who have died, who were treated at that hospital. Doctors, nurses, social workers, and child life were all there along with all the families that chose to attend. Seeing the doctors and nurses who cared for Ariella made me long for the days when Ariella was in the clinic pulling her pranks. The days that seemed so long and so difficult were actually a breeze compared to life now. I realize now the things I worried about even then just didn’t matter. Ariella missing school, not finishing assignments, missing tests. None of it mattered in the end. Even at the time I knew it though, actually. When you have a child with cancer it’s always in the back of your mind that they might die. What does school matter if she doesn’t survive in the end? But that was one of the things we had some control over. We could make sure she attended when possible and made up missed work. Being in school gave her the semblance of a normal life and allowed her to be with her friends. So really it did matter, but not in the way of grades and whatnot. And if we didn’t worry about those things it would have felt like we were losing hope. And we never lost hope. Not until the bitter end.

The ceremony was nice. There were different readings and they read the names of children who died, whether the families were present or not. We were given stones to put in a bowl when our child’s name was read, and to honor any other child we knew as well. So many names. So many. Too many. One is too many. And these doctors and nurses and social workers and child life were up and down putting stones in the bowl for all of their patients. I don’t know how they do it. They choose it. They choose to work in a profession where they will experience a lot of tragic loss. They get to know these kids, for years in some cases, love these kids, do whatever they can for them, and then make it a point to remember them after they have died. They are very often the bearers of bad news and have to look in parents’ eyes and tell them there is nothing more that can be done. They are in the profession because they want to help and in the process they experience a whole lot of hurt. I don’t think I could choose a job where kids I get to know and love often die.

It wasn’t right to be among the hospital staff without Ariella there. This is not how it’s supposed to be. None of this is right. Everything is surreal. Nothing is as it should be and never will be again. There was some comfort to be had to be surrounded by others in similar circumstances even though I didn’t really talk to others. It just wasn’t in me last night to share stories. But I do feel less lonely when among people understand. And there is hope there too. Because as we were sitting in our seats waiting to start there was a lot of chatter going on with a good bit of laughter. Normal conversation. Like things were almost okay.

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Triggers Everywhere

Beeping. Flashing numbers. Pulse Ox. Alarms. Scrubs. Hospital bed. Dinner tray. Pink pitcher. IV bags. Things I never wanted to see or hear again. Things that immediately bring me back. To inpatient treatment when we were hopeful. The the ICU when Ariella lay dying, hooked to a machine keeping her alive, but not well enough.

The sights, sounds, and smells of the hospital should be easy to avoid. Until you have to visit someone in the hospital. Which I did. Seeing the numbers flash on the monitor brought me to our days in the ICU, staring at that screen for hours, willing the numbers to change in the right direction. The IV pole. When Ariella was feeling good she used to love to ride on the IV pole through the hallway. We spent much of 2017 in the hospital and I actually have many fond memories of that time. Because despite everything there were times she had fun, times she enjoyed. Fun visits with friends. Decorating her room. Playing games. It wasn’t all bad. In fact there were many smiles and much laughter through many of our hospital stays. Sitting in the hospital room the other day all I wanted to do was escape. Because it reminds of the fond times we had and I miss them. Because it reminds me of the horrific end of her life. Because if I’m going to be in a hospital I want it to be with Ariella.

There are the fond memories and then there are the memories of the ICU. And it’s traumatic sitting in a hospital room being reminded of Ariella with tubes coming out of everywhere, hooked up to an obscene number of machines and pumps, and not being able to be saved. I never want to see the inside of a hospital room again. I know that’s not feasible. Shit happens. Triggers can’t always be avoided.

Speaking of triggers, I wish there was a place to go from October to January, where there are no signs of holidays. No pumpkins, no turkeys, not a single strand of lights. I don’t know how I’m going to survive the next couple of months. The commercials, the decorations. The people who love the holidays, every second of them. The people who hate the holidays, because of the stress. Both make me angry. Those who love them because I used to love the holidays too. Thanksgiving was always my favorite and I just used to love the festiveness from Halloween through New Year’s. Now there’s nothing to love about this season. Ariella isn’t here to help me set the table for Thanksgiving and write the menu on her dry erase board. Her menorah will be left unlit this Chanukah. No one to anticipate the gift she will get each of the 8 nights. She was so grateful for all her gifts, no matter how small. No one to try to stay up with until midnight on New Year’s eve. Every wreath, every roll of gift wrap is a slap in the face. A reminder of what I am missing, of who I am missing. Seeing everyone happy and excited about the holidays just makes me long even more for what I can’t have. Those ranting about the stress of the holidays also make me angry. Because they should be grateful they have their families to celebrate with. Now I know many might also be dreading the holidays for the same or similar reasons as me. But those are not the people I am referring to. I am referring to those that only see the work, the stress in a holiday, taking for granted that they have a family to share it with. Holidays don’t need to be stressful. They should be about family and friends and spending time together. That makes a perfect holiday. The rest doesn’t matter. So it pisses me off when people complain about the trivial stuff that just isn’t important.

I don’t want to be in the world. This world is so fucking painful. It’s been almost 6 months without my girl and I am absolutely dreading the next couple of months. And then it will be February, the month my dad died, the month Ariella was officially diagnosed, the month that started the end of it all. The triggers, reminders, dates are never ending and I have years and years and years left of yearning, of anguish, of heartache. I just want it all to be over.

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Halloween

Of all the days I have been dreading since Ariella died, I think I have been most dreading Halloween. Yes, even more than her birthday. Because I can’t escape Halloween. I am assaulted by reminders in stores, at work, in radio commercials. “Come to our fall festival.” “Come pick your pumpkin and get lost in our corn maze”. Parties, Trunk or Treats, festivals. Advertisements abound for costumes and decor and even Halloween cocktails (which may just be how I survive the night). Visual and tactile reminders everywhere of what Ariella is missing. Of what we are missing. I miss the excitement, the anticipation. I long for the days when we would spend hours at a local farm, letting Ariella lead us in the corn maze, visiting the petting zoo, going on hayrides, and of course choosing a pumpkin. We would go home and carve the biggest pumpkin we could find and then roast the seeds until they were fragrant and crispy. I miss having my house decked out with spooky decorations, a seasonal tchotchke on every surface, and the house smelling of apples or cinnamon. Ariella loved to decorate for Halloween and the creepier the better. This year there is not a fall decoration to be found in my home. It looks like any other day, like any other season. Which is apt, because every day is the same. Filled with intense longing and anguish that doesn’t disappear until I fall asleep at night. I don’t want the holiday trimmings without Ariella to enjoy it. But I can’t ignore it. It’s everywhere. Fall is fully in the air and I don’t want to participate.

What kid doesn’t love Halloween? Ok, there are some that don’t but for most it’s dressing up and parties and games and festivals and candy. More than just one day, the weeks leading up to Halloween are filled with excitement for children. Planning costumes, picking and carving pumpkins, events leading up to the big day. It’s a great time to be a kid. Ariella loved it so much it was probably her second favorite day of the year, her first being her birthday. She would be so excited about her costumes that she often had the next year’s costume planned before the current year’s Halloween had even arrived. Case in point, last year she was Hermione but weeks, maybe even a couple months before Halloween she already knew she wanted to be Harry Potter this year. She could be playing in a blizzard in February or swimming in the pool in the middle of summer, thinking about Halloween.

When Ariella was 5 we started the tradition of trick-or-treating with 2 other families, neighbors of ours. We would have pizza at one of our houses and then go trick or treating throughout our neighborhood. Each year I loved seeing the pictures of the previous years, watching the kids grow older and more independent with each passing year. They trick-or-treated together each year from that year through last year (well last year without one of our neighbors as they had moved) with the exception of 2017, when Ariella spent Halloween in the hospital. Last year Ariella had more freedom with trick or treating, leaving us behind while she and her friends made their way down the street. And she was already talking about the next year, when she wanted to go trick or treating with her friends from school, without parents at all. She never got the chance. She never got the chance to increase her independence from us, experience the teenage years, mature, grow up. She never got the chance to live her life as a fully formed person. She was growing up but still very much a child. And it breaks my heart that we will never get to see the adult she would have become.

I want nothing to do with Halloween. I don’t want to see it, hear about it, partake in any related activities, even be in my house because I don’t want to see or hear the kids having a great time, doing what any child would be doing, what my child should be doing. I don’t want to hand out candy and see the adorable kids in their adorable costumes. The chatter and laughter of the children pierces right through me. There is a laugh, a smile, missing. There is one fewer child knocking on doors, exclaiming over the candy she received, giggling through the streets. I don’t get to go home and check out her stash and steal her Almond Joys and then coax her to bed since it is a school night. Halloween is just one more reminder of everything we have lost.

The last place I want to be is at home. I was actually in the midst of trying to think of someone without kids, or with older kids, that would be available to go out to dinner with David and me so we would be away from home, away from the bustle, away from the trick or treaters. Our rabbi has brought dinner to us several times since Ariella died and it just so happened that he texted us to see if we were available on Halloween for dinner. I jumped at the chance and said as long as we we could go out this time, not stay at our house. So for the first time ever our house will be dark, uninviting. No pumpkin lights lighting our steps and no jack-o-lantern gracing our stoop. There will be no candy, just disappointed children if they happen to ring our bell.

This is my life now. Constantly navigating a battlefield trying to avoid landmines. Everything is a trigger but one false step and I hit the big one, and BOOM! It all comes crashing down again. It is exhausting and dispiriting. It is disenchanting to no longer enjoy activities and events and holidays that I once loved. I never used to want to escape from life and now I can only dream of getting far, far away from everything.

Since I can no longer partake in sharing of our kiddos in costumes here are pictures of Ariella through the years, in chronological order. Her first Halloween she was just 4 weeks old.

I still can’t believe that this is it. Any pictures I share of Ariella will be old, of memories, pictures others have seen before. No new ones. No new memories. No future milestones. I hate this. I fucking hate this and wish it all would just end.

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Trapped

I recently watched a bizarre show on Netflix called Maniac. It is about two people who are participating in this crazy drug trial that causes strange, mind-bending, hallucinations. The first pill they take causes them to relive what they would describe as the worst day of their life. The woman in this scenario actually got a hold of the drug before the trial, ran out, and in desperation to get her hands on more of the pills joined this trial. The worst day of her life was the day she and her sister were in a car accident that killed her sister. One would wonder why she would voluntary take a substance that would cause her to live that horrific moment again and again but in her words, she got to be with her sister again. She was reliving the whole day with her sister, not just the tragic end.

If there really was a medicine that could make you relive your most horrible day, I am sure I would become an addict. Because the worst day of my life didn’t start out that way. It wasn’t a great day. After all she was in the ICU and it was clear she wasn’t improving. But Ariella was alive that day. And I would do anything, anything to go back to the time when she was alive. Because there was hope. And she was still here. I could hold her, feel her, smell her, kiss her. I could pretend like everything was going to be okay in the end. Anything so I could just be with her again, even knowing the ending. Though May 9, 2019 may not actually be the worst day of my life. Because every day since that day has been the worst day of my life because every day since that day is a day that Ariella was never alive. Each day is worse than the day before because that’s just one more day without my sweet girl. It’s that day plus all the days that came before it and I can’t get out from under the weight of it.

Sometimes I feel like I should take up smoking, or drinking to excess. Eating tons of crap. Sunbathing without sunscreen. Anything to try to shave some years off my life. But we all know that life doesn’t work that way. Life is unpredictable and messy and has a way of surprising you when that’s the last thing you want. There are plenty of people who don’t take care of themselves, are in poor health, and live to be 100 while others who are in great shape and seem to be the picture of health drop dead of heart attacks at a young age. So once again I am stuck. Trapped. Destined to live my next 40 or 50 or however many years in this hell.

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Lost

Ariella’s friends are at a Halloween party tonight. Every year her dance company has a Halloween party, sometimes it’s at the dance studio but other times it had been at her dance teacher’s house. The parties at her teacher’s house were parent friendly, not just for the kids. They are elaborate. Lots of good food and fun games, a haunted woods and a campfire. Kids and parents alike have a great time.

This year the party is not just a party, but also a fundraiser for Ari’s Bears. It sounds like a great time with even more games and activities, items for sale, a silent auction, and fireworks to end the night. David and I were supposed to go. We were almost ready to leave the house. But I really did not want to go. So we didn’t.

I feel guilty about not going. After all, this event benefits our foundation. But I have learned over and over that out of necessity a grieving parent is selfish. A grieving parent must put her own needs first. A grieving parent must take care of herself in order to just survive one day to the next. So to protect myself we didn’t go. I would have been happy to see my friends but I do not want to be someplace where Ariella would be, having a great time with her friends, being the loudest one in the room, and just enjoying life. I do not want to see her friends having fun without her. I know they love and miss her but their lives go on. Ariella’s absence does not define their lives like it does mine. Nor should it. But being at the party without her only one thing would be running through my mind the entire night. She should be here. Her absence would be glaring and I just wasn’t up for that. I also wasn’t up for seeing my friends happy and having fun with their children. I don’t begrudge them their happiness but I certainly was not in a party mood. Definitely not up for small talk when all I care about is that Ariella is missing a party for her favorite holiday. I sometimes I feel like the unwanted guest. No one has made me feel that way, but I don’t even want to be around myself. I’m a downer. I have always been quiet and introverted but more so now. I can’t force myself to converse when so often I just don’t care. I know that sounds terrible but all that matters to me anymore is Ariella. Nothing else is important. I also know that I am an uncomfortable reminder of a parent’s worst nightmare. Again, no one has made me feel unwelcome, but I also know I am not the ideal friend anymore. Sometimes I’m up for hanging out but a Halloween party with Ariella’s friends was the last place I wanted to be tonight.

Instead David and I stayed in and I am pretty much doing what I did all day, just laying around without the motivation to even get off the couch. The only difference now is I added a glass of wine. I am not alone and yet feel so lonely. Because no one else can understand. Even those who are in a similar situation. Even David. Just like I can’t fully understand how they are feeling. Because everyone grieves differently. Everyone feels differently. Grieving by nature is a very lonely road and when you feel like your life’s purpose and meaning has been stolen from you there is a lot of uncertainty with how to just live and find new meaning. I just feel so lost.

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Anger

Ever since Ariella died, no, ever since she was diagnosed with cancer, I have been very angry. Angry that my sweet, innocent girl would have to suffer. Angry that our lives would be shattered. Angry that Ariella felt lousy most of the time, and couldn’t go to school and just be a normal kid. Angry that the treatments she was receiving were decades old and there weren’t any new treatments because childhood cancer receives less than 4% of national research funds. Angry that most of the world didn’t seem to care about our kids. That childhood cancer is said to be rare so not worth the time or money. Angry that we had to live in fear and anxiety that we would lose our baby girl. Angry that being carefree was stolen from Ariella. That she could no longer just enjoy her childhood, imagine growing up, living her life, without fear that her dreams would be cut short.

I was, am, furious still. I am furious with the doctors that recommended bone marrow transplant and I am furious with myself for agreeing to it. I am furious that the treatment that was supposed to save her, killed her and I am furious that the doctors couldn’t save her. I am furious that my baby girl, the innocent in all of this, lost her life at only 11, unable to realize her dreams of going to college, being a nurse, having a family. I am furious that she spent the last 2 months of her life in a hospital bed connected to machines, scared, uncomfortable, downright miserable and I am furious that I didn’t even get to really say goodbye. I am furious that modern medicine couldn’t save my daughter and I am furious that I have no choice but to go on living. I am furious when I hear about anyone else dying, children or adults, because I want it to be me. I am furious that children who very much want to live, die when there are plenty of people in the world (me) who would happily take their place. I am furious at the unfairness of it all. It isn’t fucking fair. I know I sound like a petulant child. Life isn’t fair. That is something we are taught from a young age. But I never thought I would be viewing fairness in illness and life and death.

Until yesterday evening I had not found an outlet for my anger. Writing does not touch the surface of my anger. It helps me express and process my feelings of sadness and despair but doesn’t come close to harnessing and releasing the rage brewing inside me. With the suggestion of a few people I tried a kickboxing class last night. Punching and kicking the bag was especially therapeutic. Nothing else mattered, just my intense focus on beating the shit out of the bag. And it felt damn good. The anger is still there. It won’t ever go away. But I feel like I now have a way of releasing that anger so it doesn’t continuously build up.

There is not a minute that goes by that I don’t have thoughts of my girl and then there are triggers that make the pain even greater, because they sucker punch me when I’m not expecting them. Today I dropped a student off in the classroom where they were playing the game Headbands. That immediately brought me back to the hospital and clinic where we played round after round after round of the game. And those aren’t bad memories. Sure we were in the hospital but we were having fun (well as much fun as you can have on your millionth round of Headbands) and spending time together. When I saw the children playing the game I wanted so badly to be back in the hospital with Ariella playing that game. Boy my perspective has changed. I never thought I would look back to the year of first line treatment as a time I would miss and one day want to return to. But I would give anything, anything, to be back there.

I still think every day, multiple times a day, that I will not get through this. The speed of time is something mentioned often. “Summer flew by”, “I can’t believe it’s almost November”, “The holidays will be here before we know it.” But time does nothing for me but drag and drag. The days are excruciatingly long and I am usually counting down the minutes when I can reasonably go to bed. Each day without Ariella is a lifetime and the thought of 40 or 50 more years of this, of living without the most important part of me, is horrifying. I’ll be honest, when driving I often fantasize about just sharply turning the wheel and driving off the road or crashing into the guardrail at 70 mph, but I would never do it. Mostly because I don’t want to hurt anyone else and be the cause of someone else’s heartbreak. Also, while I am not afraid of dying, I am afraid of pain. There is no out. There is no escaping this agony. And I don’t want to live like this.