Month: November 2019

Posted on

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.

Posted on

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.

Posted on

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.

Posted on

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.

Posted on

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.

Posted on

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.