Tag: grief

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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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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.

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Grief is not the Problem

I haven’t blogged lately. I’ve been busy. Busy is a double edged sword. Busy keeps my mind distracted, allows me to feel like a normal person. But busy is exhausting. The energy required to get through a day of work, a day of errands, a day of planning events, takes its toll. When busy ends I am trapped with my thoughts, can’t get outside of my own head. All of the thoughts and emotions that were pushed aside, come flooding back as soon as there is idle time.

So many people want to “solve” my grief. But grief is not a problem to be solved. Grief is a state of being, like happiness. No one would view happiness as a problem and grief is just as valid. They want to solve my grief to make them feel better. They are uncomfortable with it. They think that giving the loss meaning, a purpose, will make it okay, will allow me to move on and all will be right in the world. But there is no purpose or meaning that makes any of this worth it. There is nothing, NOTHING worth the cost of a child. And I am comfortable in my grief. This grief will be a lifelong companion. Maybe one day it will take some steps back, won’t be the primary player in my daily life, but it will forever be present and I have already gotten used to being covered in its blanket.

The ones that truly care, don’t try to make me feel better or get rid of the pain. They know they can’t. They don’t spout useless and offensive platitudes and are comfortable just sitting in quiet, or listening when I need to talk about Ariella. I am lucky to have such a good support system. I am lucky that people I barely knew have shown up. I am lucky that people I knew years ago but had since lost touch with take this so personally and feel our loss so deeply. I am lucky that those who have been there more than make up for those who haven’t. They say that in profound loss families are often torn apart but friends and even strangers become family. And this is so true. Some of our family has been wonderful but friends and strangers have more than stepped up to fill the roles of those who haven’t been there. I am no longer allowing myself to waste my energy caring about the ones who disappeared because I have the ones I need.

Day to day life is really hard. I still just can’t care about the minutiae of living. It is all so petty and trivial. None of it matters. It does matter greatly to those who haven’t experienced such profound loss but I can no longer relate. Perspective takes a huge shift and I feel selfish because I just can’t care about stuff that in the grand scheme of things is just not a big deal. Maybe in the immediate aftermath people hugged their kids tighter, vowed not to take their lives for granted, realized what is most important. But I’ve seen that gradually shift, back to complaining about the daily annoyances, not appreciating what they have, wanting more, wanting better. And it’s natural. It’s only human. But while everyone else moves on, gets to worry about the small stuff I only care about the huge, gaping hole left in my life. And there is a huge disconnect, a distance forming that I don’t know if I will ever be able to bridge.

I don’t feel fully present in this life. I feel like I am watching myself going through the motions with a sense of detachment. I do what I have to do to survive. Even in groups of people, I hold back, don’t fully partake. Because most of my thoughts are with Ariella and when I think about her I think about the futility of everything else. And it just doesn’t matter. My biggest fear these days is that I will live a long life. But I feel like I’m living with 1 foot here and 1 foot in Heaven and can’t be fully here. I don’t want to be here.

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A Visceral Feeling

I feel sick. A wave of nausea tries to consume me. My head feels like it is being squeezed In a vice, getting tighter and tighter. My heart is pounding like a drum, threatening to burst out of my chest. I can’t stop shaking from my fingers to my toes. There is a lump in my throat. A pit in my stomach. A heavy, suffocating feeling of dread. My eyes begin to water. Sometimes I can hold the tears back. I have learned to fight them. I have to. Can’t be crying at work with my students, waiting in line at the post office, trying to buy groceries without drawing attention. I can get tearful and sometimes it will stop there. But more often if I start to let them go they then pour from my eyes without restraint. Relentless. Once released unable to be tempered. The crying takes over my whole body. Uncontrollable. So you can see why I have to fight the tears. Why I can’t always let them fall.

This is how I feel every time I think about Ariella. Every time. That physical response takes over. Good memories and not so good. Things I remember that she liked and things I see or do that I know she would like. Halloween and fall decorations abound. She loved Halloween. Every trip to the store involved a purchase of another pumpkin or decoration. The other day I ran into Wegmans and they had all sorts of fun painted pumpkins. Ariella would have wanted all of them and then gone home to paint her own. Cue my body to react. Grief is not only mental and emotional. It is a visceral reaction felt way in the depths of the body that nothing else can reach. I did get teary but as I said I learned to push the tears back. Not indefinitely though. I can hold it together as long as I need to (most of the time) but once in a “safe” space it all comes spewing out.

This response. It is caused by immense despair. Oppressive anguish and heartache. Overpowering panic. Panic that I will never see Ariella again. Never be able to kiss her on the head as she walks by. Never feel her arms squeeze me tight in another bear hug. Never again hear her say “I love you Mommy.” I’m not sure why the panic. One usually fears the unknown. I know what my future holds. I know I’m faced with a lifetime of sadness and yearning. I know that whatever happiness I may eventually find will have to coexist with sorrow. I have been through the absolute worst. I shouldn’t be afraid of anything else. I know this is permanent. But actually I haven’t lived through the worst thing imaginable. That would imply the worst is over and that’s not even close. Every day I endure the unfathomable. Every day is the worst day of my life. Because every day I live is a day I live without Ariella. Each time remembering anew that Ariella isn’t here and that this is forever fills me with a terror unlike any other.

I have moments, maybe days even, where I know I look okay. That I seem to be moving forward, living life, functioning. I am keeping busy and I probably look almost normal. Strangers can’t tell the extent of my sadness. Or that I am sad at all. But I am a fraud. Because that face I am putting on for the world does not accurately represent how I am truly doing. I am not doing well. I am so far from okay. Each day is a fresh struggle. A challenge to endure. I am so very tired. Sleep is not as elusive as it once was and yet I don’t wake up feeling rested. And then there are stretches. Two or three nights in a row where I don’t get more than an hour or two of sleep. It catches up.

Living with grief is a contradiction. I want to quietly bury myself deep in my blankets and just sleep forever while at the same time I can’t stay still. I am crawling in my skin, literally trying to refrain from pulling my hair in anguish, wanting to scream at the top of my lungs. I want to be around supportive people but at the same time I don’t want to interact with anyone. I crave connection and I crave solitude. Keeping busy keeps me sane but at the same time I don’t want to do anything. This life seems unendurable and yet I have no other choice but to keep on living. And I hate that.

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12th Birthday

Twelve years ago today, at 6:00 in the morning, Ariella Paige made her grand entrance into this world. The weather today is actually similar to the weather when we brought her home from the hospital. It was quite hot, too hot even for me to take her for walks in the stroller. Anyway, like everything else she did, she took her time getting here, making her debut a week and a half late. Even taking her time through labor, causing me to end up having a c-section. That day was the happiest of my life. I had always wanted a little girl though I really thought I was having a boy. Ariella filled a part of me that I didn’t know needed to be filled. She completed our family and we were looking forward to a lifetime of happiness. She was perfect and healthy at birth and at that time we never could have imagined the heartbreak to come just less than 12 years later.

Ariella had her whole life ahead of her. She was a precocious child filled with light and exuberance and joy. She wasn’t perfect, not by any means. She was stubborn and had a temper and attitude that could rival any teen. But she was also fiercely independent and a leader among her friends. She didn’t get caught up in drama and was kind to everyone she met. She loved hard, she didn’t hold grudges, and she was generous, compassionate, and sincere. Her spunky and feisty personality is what got her through those two years of hell, never letting cancer stop her.

1st Birthday

By her first birthday Ariella was always on the move and began a lifetime of non-stop talking. Her second birthday brought the start of gymnastics, preschool, and the terrible twos. Though we found the year she was three much more challenging than the year she was two. She was stubborn and had quite the temper, which were traits that she carried to the end.

2nd Birthday Party
2nd Birthday

Ariella always loved her birthdays (what child doesn’t). Her love of the fall and animals led to parties on farms and her love of crafts led to painting and crafting parties. But regardless of the theme we always celebrated in some way, as all families do.

3rd Birthday
4th Birthday
5th Birthday
6th Birthday
7th Birthday

Her Pop-Pop’s birthday is the day after Ariella’s and they were always celebrated together with a dinner out.

The last birthday celebrated together, her 8th and his 72nd. Her Pop-Pop died 4 months later
8th Birthday

Ariella’s 9th birthday was the last one before everything went to shit. Her leg pain had started by then but we thought it was just an injury. She was super skinny because she had lost an alarming amount of weight and we were trying to figure that out with her pediatrician. Cancer was never a thought, especially when blood work came back normal. Who could have guessed that less than 4 months later our lives would be completely turned upside-down, not for the last time?

Even with all the hell we had been through we did not imagine after diagnosis that Ariella would have only 2 more birthdays. Her 10th birthday started in the hospital but she was discharged early that morning so she got to have a sleep over with her friends that night.

This was the day before her birthday, a party in the hospital room thrown by child life

And finally her 11th birthday. The last one. Even with the relapse we did not imagine she would only have 11 birthdays. She was feeling great most of the time and happy and vibrant. Those who didn’t know her would never have known she was sick. Being true to her fearless self Ariella had an indoor skydiving party.

And then February 26th, 2019. Her bone marrow transplant, often referred to as a re-birthday. Oh how excited and hopeful we were. And I felt it was such a good sign that it was the day after the 3rd anniversary of my father’s death. They had those connections. Their birthdays being 1 day apart, and just having a close relationship. If only. That day is the one birthday of any type I wish we didn’t have. Because that day, the day that was supposed to help her live, is what caused her death.

How? How did she only live 7 months after her 11th birthday? I just don’t understand it. I will never understand it. I still can’t believe this is it. We have to go on without her. We have to wish her happy birthday in Heaven. She should be here. We should get to celebrate 12 with her and every birthday after that. We should be celebrating the last year before her teen years (even though she already had the attitude of a teen). She should be studying for her Bat Mitzvah. I just can’t. I can’t do this. This is impossible. It is unbearable.

This has not gotten any easier. In fact, it seems to keep getting harder and harder. Life continues to go on, the seasons change, and one day continues to turn into the next. There is so much growth and activity surrounding me and yet I feel stagnant, rooted to May 9, 2019 at 4:21 PM when Ariella took her last breath. Because that moment is when I too died. I am not the same person, will never be the same person. All the best parts of me died along with Ariella that day.

This year, instead of a noisy sleepover at our house we celebrated Ariella’s birthday without her, where she would have wanted to be, at Build-a-Bear to build bears to make other children feel better. Instead of taking her out to one of her favorite places for dinner we are gathering at the cemetery, sending her messages that we dream about telling her in person. Instead of her getting upset with us for singing Happy Birthday to her (she hated that and actually had a meltdown over it at one of her parties) we can only hope that she hears us singing to her from Heaven. I still get to celebrate my Dad and Ariella together, but this time it’s at their grave sites. It is all wrong. So very wrong. Two of my favorite people have died. The most important person in my life died. I don’t want to live without her. I don’t want to do this anymore.

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Cancer is a Thief

Cancer is a fucking thief. Cancer stole every fucking thing from me. Before cancer ever stole Ariella, it had already taken so much from us. Cancer stole our lives. Our feeling of safety, of security. Cancer stole our carefree, mostly worry-free existence.

Cancer stole Ariella’s childhood. Even when she was still here. Cancer stole her innocence, her ability to just be a child. She went from happy-go-lucky to being anxious about needles and chemo, surgeries and radiation. Instead of being nervous about dance competitions she was terrified of scans and the results. Cancer stole Ariella’s ability to dance for a year and a half. Her passion, and one of the few things that would have helped her get through all the bad days was cruelly taken from her, because of the location of the tumor. Cancer stole her normalcy. She couldn’t attend school. She traded camp and vacations for lengthy hospitalizations.

With everything cancer stole, it didn’t stop there. Our lives were irreparably changed once Ariella was diagnosed. We felt like we had been through a war when she finally finished treatment the first time and our fear and anxiety remained, rightfully so, since cancer returned only 5 months later to steal even more from us.

Cancer had already taken so much from us, ripped us to shreds, gutted us. And continued to try to take our spirits. But none of that ended up mattering. Because cancer stole the most precious, the most important. I would trade anything to have her back. I would put up with anything to have her back.

The thievery didn’t stop with our lovely daughter. Cancer continued, continues to steal. Cancer stole my reason for living, my purpose, my identity, my most important role. Cancer stole my joy, my ability to enjoy life. Cancer stole my future. Future milestones with Ariella. Our mother-daughter relationship. My New York buddy, musical buddy. Future memories. I will miss out on talking about boys, teaching her to drive, sending her off to college, planning her wedding, having grandchildren. Cancer stole my ability to enjoy things I used to love. The beach was one of my favorite places but now just a reminder of who isn’t there. I used to love going to NY, even before Ariella but now the thought of setting foot in that city, or even on a train horrifies me because she should be there. Books and TV shows are filled with triggers as is social media. National daughter day? What the hell is that? Cancer stole my ability to just be, just relax. Regular, everyday activities were stripped from my routine. No more picking up from school, helping with homework, watching TV together, reading together, movie night, game night, driving to the dance studio, watching her dance, just parenting. Cancer stole all of that from me. I’m not just missing my daughter, I’m missing everything that goes along with being a parent. Cancer not only stole my daughter’s life, but stole my life as well. Cancer stole who I was. I will never be that person again.