Author: stein28

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Fight or Flight

Nausea. Pit in my stomach. Heart in my throat. Shaking. Heart palpitations. Headache. Adrenaline pumping. Edge of my seat. Sweating. Muscles tighten. This is what happens when the body is in a fight or flight state. A state I am in much of the time. Constantly on alert. Danger is all around me. It’s impossible to calm this reaction when anything can trigger that grief wave to come crashing over me. Danger is lurking in every corner, in every possible interaction, in any song that may come on the radio, in any book. Nothing is safe. Imagine being in this state. Now imagine being in this state more often than not. Sounds exhausting, right? It is. It is draining, debilitating. It’s why I would rather stay home. Home is safer. I have control at home. I have no control anywhere else.

Now imagine feeling like this but then being in a situation that heightens your response even more. It’s horrendous. Today I was with someone when he met with a radiation oncologist to discuss treatment options. I have taken him to several appointments but previous appointments did not trigger me as I pretty much stayed in the waiting room. But this one. This one brought me back. Brought me back to the radiation planning and radiation appointments with Ariella. I felt like I was physically back there, discussing my daughter, with all the hopes and fears that went along with it. Though the situations are very different, this appointment was not so different. We discussed the preparation leading up to radiation and what the schedule would look like. Just like we did at Ariella’s consult. Ariella’s radiation appointments weren’t so bad. She did have some nasty side effects but she managed to have fun at her appointments. She liked the techs and she was always her goofy self when changing and wearing her gown. She laughed quite a bit and made me laugh too during those appointments. I wish. I wish that’s where I was today. Discussing Ariella’s radiation plan. Because we knew Ewing’s responds extremely well to radiation. We just knew radiation was going to kill those tumors. We were so hopeful and knew that with the radiation we were likely nearing the end of the next phase of treatment. And radiation worked. Scans following radiation showed no evidence of active disease. All I could think about at this appointment was how happy Ariella was even during her radiation. How she could make any situation fun, how lively and exuberant she was, how hopeful she was. That she was alive with no idea what was coming. It was everything I could do to keep from screaming, to keep from running out of the room, to keep from crying loud, ugly tears. I couldn’t wait to get out of there.

I’m sure others may think I’m crazy for doing this again. Going to oncologist appointments, reliving my nightmare. But I can’t avoid it. Not in this situation. And I’m generally glad to do it. I know I serve as a comfort to this person and he repeatedly assures me that if it’s too much I can stop anytime. But life doesn’t work that way. It’s unfair that cancer has touched us again so soon but we do what we have to for the people that need us. And helping him gives me a sense of purpose and meaning which I have pretty much otherwise lost. Today’s appointment just happened to be especially hard.

Surprisingly to me I have not lost my survival instinct. As I’ve mentioned before I no longer fear death and in fact I would welcome death with open arms. I frequently think that if I was in a situation that could become dangerous I would not try to avoid it. But today I had to slam on my breaks to avoid hitting a deer. Maybe it was because I had someone in the car with me. Maybe it’s because while I’m not afraid of dying I am afraid of being in pain. Maybe it was just a reflex. I know this is a very uncomfortable subject but it is a truth among bereaved parents. I have heard from many, many parents who have all said they want to die. Most have said they would not commit suicide but I would say a good number have a death wish. Though some have said that they take comfort in knowing suicide is always an option “tomorrow”. That’s how they get through each day. There are articles and books discussing this taboo subject. It can’t be ignored. Many bereaved parents, myself included, feel like life is no longer worth living. And the pain we have to endure for another lifetime. Why should we go on living a life full of anguish and torment when we have no reason to live anymore? Telling me I’m loved and important to others does not make a difference. Because feeling unloved has nothing to do with my reasons for wanting to leave this world. I know I’m loved and I know others would be in pain if I died. But to me now everything is meaningless. I don’t want to live without my daughter. I don’t want to live with this never ending heartache, despair, and longing. Now matter how loved and supported I am my reason for being is gone and the pain will never go away. That is why I am not afraid to die. That is why I wish my life would end.

I promised myself that I would blog my truth. I keep to myself a good bit, I’m not good at small talk, and I generally do not feel comfortable talking about how I’m feeling, especially when reaching into the darkest parts of my soul. But I need for others to know how I’m feeling, to know I’m not okay, and that includes sharing the ugliest of truths. And I also hope by sharing my darkest of thoughts other parents in similar situations will take comfort in realizing they are not alone.

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Only the Good Die Young

Last night I went to a concert. A sweet friend invited me to go see Billy Joel with her. I actually accepted without hesitation. I love Billy Joel, I had seen him twice before, and it’s definitely more mellow than some other concert experiences. I figured maybe if I continue to force myself to get out then one day I will stop just going through the motions and will actually find myself enjoying these experiences.

Surprisingly to me I did not waffle with this decision in the days leading to the concert. I thought I would experience the panic and terror that I typically experience when I need to go anywhere. And this wasn’t just anywhere. This was a packed stadium filled with noise and activity and people, many of whom I would know, with no escape.

I’m not sure I can describe how I felt at the concert. It was a good show but I certainly didn’t get into it like I would have in my previous life. I wasn’t distracted from life. Not at all. In fact it brought back memories of the couple of concerts to which I took Ariella and made me think about all the concerts she will never get to attend. I was trying to imagine whether or not she would have liked it, would have enjoyed the music. There were a good number of children there. But it was mostly an adult crowd for which I was grateful. But this is the thing about grief. It really does invade every single aspect of your life. Whereas before I would go to a 3 hour concert and not have my main focus be on my child, now she’s all I think about wherever I go, whatever I’m doing. There is no distraction.

That all said, I am glad I went. Even though I spent much of the show thinking about Ariella, it still felt like a bit of an escape. I can’t adequately describe the experience. I’m actually not exactly sure how I feel about it to be honest. I think I was able to do it because it is unlikely that a Billy Joel concert would ever have been an experience that I shared with Ariella. And music. Music has a way of helping even though it can tug at the emotions. I’m not sure I can say I had fun. Maybe it was fun. I wasn’t wishing I was at home instead so that’s something. And it was entertaining. I’ll take that.

Today, however, I’m exhausted. I think I’ve been trying to do too much in an effort to get out of my own head. Going out, doing anything is exhausting. I’m fortunate that I don’t have to pretend to be okay with my friends, but the interactions are still tiring. I have a hard time participating in conversations in a meaningful way. I’m sad and I don’t want to be a downer (even know I know they don’t care). Interacting with strangers or acquaintances is even more tiring. Because I generally don’t try to fake it I know I must come across as unfriendly and miserable. It’s easier just to stay at home and not have to interact with anyone. I’m trying to find that balance because staying at home staring at the TV doesn’t do me any good either. But I think I need a few days of that. There is no escaping your grief. Wherever you go it follows you like a shadow, threatening to tear you down, bring you to your knees without warning. It’s okay if that happens at home. It’s terrifying when it happens in public.

I don’t think I have become any more adept at navigating grief but I am learning that while nothing really serves as a distraction, there have been activities that have been therapeutic. Writing of course is probably number one. Running/exercising is probably the activity that comes closest to actually being able to distract me from my emotional pain. The pain doesn’t stay away of course but the endorphins that are released with physical activity must help. Music as I have mentioned certainly has a therapeutic role and the other day I did some pottery painting which was also quite therapeutic. Brief moments of time where I can focus on something not instead of the pain but in addition to the pain.

Despite finding those brief moments where I feel almost okay, I still just don’t see the purpose or meaning of living anymore. Ariella was my purpose, my reason for being. Taking care of her was my most important job. There is nothing else that can give my life that same meaning. I don’t have someone else that needs me like she did, that needs caring for. That I can love and raise. I force myself to keep going because that’s what she did in the most impossible of circumstances. But I don’t want to. Parents who have been in this position assure the newly bereaved that we will learn to live again. But that only makes me more sad.

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Beautiful Day?

Today is a beautiful day. The sun is shining, there are white fluffy clouds in the sky, and it’s not too hot or humid. I was sitting by Ariella’s grave on this beautiful, sunny day, and took in how pretty it was, how pretty her grave site is with beautiful ornaments decorating the trees, blowing gently in the breeze. What a stark contrast to reality. There is nothing beautiful about a child dying. There is nothing beautiful about how I’m feeling. The pain seems to be so much greater on these pretty days. I used to have an extra spring in my step on pretty days. Days like that could always improve my mood. Not anymore. Not only do pretty days contradict my mood but they highlight exactly what I should be doing on a day like this but no longer get to do.

A day like today Ariella and I should be taking our dog for long walks, spending time at the pool, going hiking in search of waterfalls, riding bikes, going to the park, playing outside. We should be going out for snowballs or frozen yogurt and then finding live music to listen to outside. Beautiful days are not meant to be spent inside and yet that is all I want to do. There is no enjoying this lovely day. There is no immediate mood elevation because the weather is so perfect. There is no spring in my step. And then I feel guilty for not enjoying the pretty day. I do take comfort in nature. I do appreciate getting out and taking my dog for walks. But the sunshine and brightness pisses me off. I am not bright and chipper and sparkling. I feel like the weather is mocking me, showing me exactly what I don’t have, what I’m missing. Everyone seems to be in a better mood when the weather is good but I remain sullen, unable to appreciate the nice breeze, the lightness, because I feel anything but.

I would take cloudy, gray, rainy and gloomy weather any day over this. At least it matches my mood. At least I won’t be the only one feeling cranky, sad. I think I feel lonelier on the pretty days. Because the rest of the world seems to be happy and carefree. I can’t imagine what kind of image I present. Unsmiling, constantly on the verge of tears, can barely exchange the most basic of pleasantries, even on pretty days like today. I’m basically just a shell of my former self and I think it’s easier to hide on the crappy days.

What kind of life is this, just existing to get through the days? What is the point? There is no meaning to my days. I get up, go through the motions, and count down the minutes until it’s a reasonable time to go to bed. Every day. I may get out, I may go to the gym, grab a bite to eat but it’s not with enjoyment. It’s to kill time until I can sleep away the pain once again. At least I’m able to sleep again. It is my only escape from the pure hell that is now my life. Every day more of the same. Life goes on around me but I remain stuck in this nightmare of just trying to survive. And I wonder, will I ever be able to start living again?

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It Keeps Happening

Two posts in one day. Well I actually wrote the stones post yesterday, just didn’t post until today. I write because I just don’t know what else to do. I don’t want to go anywhere, I don’t want to do anything, I can’t concentrate on books, so I have to do something. I have so much I want to say, need to say but I can’t actually say it. So I write it. I know that so much of what I write is repetitive but that’s because nothing has changed. I’m still in this dark, dark place with no signs of emerging from this black hole of despair. I’m still at a loss as to how to go on living, functioning in this world without the person that completed me, completed us, completed our family.

It took a long time to come to terms with the fact that Ariella had cancer. It was surreal, it never felt like that was our real life. It was like living in an alternate reality. Even when she relapsed it was so hard to believe that we had a child with cancer. It was simply unfathomable. We did everything we needed to do but it was impossible to believe that was our life. Things like that didn’t happen to us. We were so fortunate and happy. We had a fiercely independent, sassy, smart, kind, and beautiful young girl who was rarely ever sick. Cancer and illness happened to other families. Not ours. Of course we thought she would beat it. You always think your kid is the one that’s going to beat the odds, the one that’s going to make it. Sure cancer is horrible but we would get through it and all would be fine again. So imagine how hard it was to come to terms with the fact that she died. I still find myself hoping that this is just a horrible, horrible nightmare and that I will soon wake up. How can this be real? How can this be our life now? What’s really sad to me is that I have gotten used to not having Ariella around. Actually, that’s not true. I’m still not used to the quiet. I miss her noise, miss the evidence that she is there, miss the activity, miss her running through the house and her larger than life spirit. I’m not used to that at all. But I no longer expect her to walk in the room any minute. I no longer pick up my phone to send her a text or show her a cute or funny picture or video I saw on Instagram. I no longer pull out 3 plates when serving dinner. I do still talk to her about my day but I no longer expect to hear her answer. And that makes it all the more real that she is never coming back. That we have to live the rest of our lives without her. That this is our new, shitty, reality.

Early this morning another little girl we know died. Different cancer but similar story to Ariella (though this girl had been fighting cancer for much longer than Ariella). They were in the hospital together with bone marrow transplants just a few days apart. This girl, like Ariella, had complication after complication, setback after setback. Tiny baby steps forward and huge steps backward. Earlier on in their hospital stays her mom and I would talk about the day they would both be out of there, how they would celebrate, and the stories they would share. How even though they had at that time only seen each other in passing we knew they would have an incredible bond with everything they both had been through. Be careful what you wish for, right? They both made it out of the hospital, not in the way any of us wanted. They are both together (I hope, still not sure what I believe) but again, not in the way any of us wanted. It hurts that much more that neither of the girls survived. My faith was shattered when Ariella died. But I did retain some hope that this little girl would make it. I checked Facebook daily for updates. Clung to that glimmer of optimism when she seemed to be making some improvements. Felt every bit of devastation with each setback. One of them should have made it. They both should have made it. My heart breaks even more each time I learn of another child dying, whether I know them personally or not. I don’t understand this world. I can’t make sense of it. There is no sense to be made. None of this is okay. None of this will ever be okay. I don’t understand why kids keep dying. This shouldn’t be happening and my heart cannot take it. But I continue to follow the kids’ stories. I continue to check on them daily. Because the stories need to be shared. The children need a voice. The parents need support. As long as people continue to look away kids will continue to die from cancer. It’s hard to see. It’s impossible to watch. Stories are often not shared. There is not enough awareness. I was blissfully ignorant until my child was diagnosed with cancer. Never thought it could happen to us. I will not allow that ignorance to continue. Our children are worth more than that. And one day it just may be your child. As much as it hurts I will not turn my back on kids fighting cancer or their families. They are my tribe. And if the unthinkable happens I will be there also with my arms wide open.

The difference between this girl’s mom and me is her mom’s seemingly unwavering faith (though I do not know if her faith has been impacted by her profound loss). I am jealous of people who continue to have faith even in the darkest of times. Faith gives them something to grasp, serves as a comfort, knowing for sure they will one day be reunited with their child. This does not take away the immense pain they have without their child beside them here on Earth but I guess gives some reason or purpose, some meaning, some hope, knowing they will one day see their child again. I wish I could have that kind of faith. Make some sense out of the senseless. But I just don’t. I just don’t have faith that a greater being or higher power would allow innocent children to suffer and die. So here I am, still trying to figure out some meaning or purpose to this new life I am living.

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Stones

In Jewish tradition, instead of leaving flowers on a grave site, you leave stones. The origins of this are unclear but there are several schools of thought about it. One thought is that Jewish priests become impure if they get too close to a corpse so stones are left to warn the priest to stay back. Another thought is superstition. It is believed that the Jewish soul dwells for a while in the grave and stones are piled upon it to keep the soul down in this world, which may serve as a comfort. The stones also prevent demons from getting into the graves. The reason I always knew was that flowers, though beautiful, die. A stone does not die and signifies the permanence of memory and legacy.

This tradition is so fitting for Ariella. For whatever reason, she loved stones and rocks. And they didn’t have to be pretty or smooth or shiny rocks. They didn’t have to be a particular shape or color or anything special. She did not discriminate. Any rock was worth keeping. And she did. She carried them in the pockets of her sweatpants or hoodies, among many, many other objects. Often not cleaning them off first so she would also be carrying piles of dirt. She actually even slept with them in her hand sometimes. Why sleep with a nice, cuddly, stuffed animal when you could curl up with a rock? She would find large rocks outside, huge ones, even pieces of asphalt or just hunks of dirty, ugly, rocks and want to keep them. We compromised. She was allowed to keep those outside. They are still outside our door. These are the things I miss so much about her. Her quirks, her weirdness, her ability to take pleasure in such simple things as rocks and stones. These are also the memories I worry about forgetting. The little things, the ones that didn’t seem so important but were actually everything, because that was who she was, what made her, her. These little things, little memories, characteristics that made her the special, unique person she was. How do we live without that? She filled our lives, made them whole, made life interesting and silly and fun. Life is dull without Ariella in it. I don’t get to empty pockets filled with all sorts of random items, including rocks. I don’t get to witness her pranks or have her repeatedly try to scare me (which she did quite often, making me scream). I don’t get to see her silly faces anymore or hear her contagious laugh, or just be silly together. Life is drab, empty, meaningless, without Ariella in it. She was so vibrant, exuberant, outgoing, and full of life that her absence is always noticed. She was larger than life and nothing can replace that personality, that energy, that spirit.

When I go to the cemetery I always make sure to find the perfect stone to place on her grave. Sometimes I find one that looks like a heart, or is a pretty color or perfectly smooth. Other times I find the biggest one, that one that doesn’t have anything special about it, because she would have liked that one just as much. I always make a ritual of it. But with all that said about the stones I do love when I see fresh flowers on her grave. It comforts me to know that I’m not the only one thinking about her, visiting her, remembering her. I just hope that in 1 year, 3 years, 10 years she is getting as many flowers and as many visitors as she is now. Other than living without her, nothing else scares me as much as the fear of people forgetting her. She must be remembered, always. Her legacy must live on, always. Without that, there is no way I will survive this life without her. So don’t stop talking about her, to me, to others. Share her story, say her name. Always. Don’t let her be forgotten. Even years from now. She existed. Don’t erase her existence by not talking about her or remembering her. She did not deserve to die but she does deserve to always be remembered.

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It’s Okay that you’re Not Okay

My sister-in-law has been searching for a way to help. She doesn’t live local to us and she knows words are pretty meaningless. But that doesn’t stop her from texting to let me know she’s still here, and I appreciate that more than I think she realizes, especially since I don’t always respond. She recently sent me a book that I found to be pretty helpful. It’s called “It’s Ok that You’re not Ok” by Megan Devine and it’s different in that it is helpful for the person who is grieving, but is also helpful for those who are trying to support the grieving person. It’s not specific to child loss but this book doesn’t need to be. There are practical tips for trying to relieve some suffering, and she makes a significant distinction between the pain and suffering. The gist is that the pain is not going anywhere. It’s here to stay. But the griever can try to reduce some of his or her suffering.

The book follows the premise that society and our culture want to fix everything. Humans don’t want to see others in pain. “Healthy” people are happy, motivated, enjoy life. There is something wrong with you if you can’t get beyond the pain of the loss, if you’re unhappy, if you are withdrawing from people and life in general. This book negates that. This book is trying to change our view as a whole on grieving and loss. Rather than perpetuate the common thoughts and cliches the author of this book makes it clear that none of it is okay, that it never will be okay, that how you want to deal with it is okay, and it’s about the griever, not those trying to support them. She does not encourage staying in the dark period forever but she is also realistic that it’s unlikely for someone who experienced a significant loss to one day go back to having a “normal” happy life. She encourages trying to find that middle path, trying to go back to living with the grief rather than trying to overcome it.

This book really resonated with me. Her strategies for trying to reduce the suffering are doable and some that I am already incorporating (writing and exercising to name two. She actually offers an online course “Writing your Grief” which is intriguing to me but the price is a bit steep). None of what she wrote was surprising to me. I felt like she was reading my mind. But it’s encouraging to know my thoughts and behaviors are okay and to be expected. I like that she didn’t paint a rosy picture at the end of it all. Because I wouldn’t trust that. I like that she is realistic and normalizes the experience of grieving. And I like that she is brutally honest that profound loss forever changes you and despite what any of your supporters may say your goal should not be to go back to the person you were before the loss. That will never happen.

The reason I am mentioning this book here is because so many people say they wish they knew how to help. I think their idea of help is to help get rid of the pain, help the griever move on. That isn’t going to happen. But it does offer concrete ways to provide support. The first couple parts of the book explain what is going on in the mind and body of someone who is grieving and why they may react certain ways to those trying to help. The third part of the book has a chapter for the supporters. It will help the supporters provide comfort and help more effectively but also remind them that if they are rebuked it’s not personal. For those that want to try to understand a bit more I encourage you to pick up this book. The author also has a site and Facebook page, Refuge in Grief.

I have mentioned before that so far I am fortunate that my supporters have met me where I am. No one is trying to push me out of my safe places and they all are following my lead. Today for example. I had rallied some of Ariella’s friends to go to Build-a-Bear and use up some of the gift cards she had received to build up our inventory for Ari’s Bears. When David and I got there to meet her friends I could not set foot into the store. We had been there so many times with Ariella and her friends and I just couldn’t do it without her. We had so much fun in the store. Selecting the different animals and dressing them in the perfect outfits and accessories. Sometimes we were there for several hours. The staff and managers knew her. We had met strangers in the store who donated to us on the spot when they heard about what we are doing. Many weekends were spent making bears. That was what she wanted to do. I don’t know why I was able to go to the hospital to deliver bears but Build a Bear did me in. There is no rhyme or reason to it, no predicting what will be impossible and what will be okay until I’m in it. But the point is that my friend whose daughter was there sat with me outside the store, didn’t try to encourage me to go in, and was just there.

I really hate this life I’m living right now. I don’t like being crippled by the idea of going into a store. I also don’t like how exposed and vulnerable I feel when I am out. The pain is ever present but on the other hand it doesn’t feel right that the pain should ever soften. How can it? The person who completed me, completed our family has died. How does the pain of that ever go away, or even soften? I don’t want to live with this pain forever but I also don’t want it to go away. The pain is my strongest connection to Ariella. It’s real, it’s tangible. Relief of some of the pain seems like a betrayal. But living a lifetime like this is not feasible either. There is an extremely long, windy, and rocky road ahead of us and I just don’t know how I’m going to make it through.

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Grief is Not a Four Letter Word

I can’t. I can’t do this. I can’t live like this. I can’t live with this huge, gaping hole in my heart. I know I’m redundant. I repeat myself quite a bit. But that’s the theme here. How does one go on living when the person that made them whole is gone? How does one move forward when all she wants to do is curl up in the fetal position and stay there indefinitely? How can I interact with the world when it feels like the world is conspiring against me? I know we’re not the only ones in this world grieving or sad or angry or dealing with what feels impossible. But all I see are people living their normal lives. Carefree. Happy. Satisfied. And all I feel is anguish, intense longing, despair, heartache. Minute by minute, second by second. What a horrible existence.

Here’s the thing about grief, especially with the loss of a child. The sadness alone is overwhelming and intense. The yearning to hold your child again, hear their voice, feel their arms around you. But it’s not just about the sadness of missing the person most important to you in the world. It’s about all the unfulfilled plans and dreams. It’s about the guilt and regrets. The “What ifs?” It’s reliving their last few days, weeks, months, begging and pleading for it to just be a horrible nightmare. It’s being confronted with the reality of it every morning when you wake up. It’s about having to get through each day minute by excruciating minute with no reprieve. It’s about all the conversations you never got to have. It’s about not having nearly enough time with your child. Parents should not outlive their children. It’s about watching their friends live their lives, grow up, achieve their dreams without your child. It’s about losing your role/identity of being an active parent (especially if it was your only child). But even if not your only child, parenting roles and sibling roles change. It’s about getting used to this new life without that child. When a child dies so do all their dreams and wishes and goals. The parents have only the memories to carry them through and that is just not good enough when you have so many plans that can never be fulfilled. It’s just not the natural order of things. Your whole life changes in an instant and that makes grief that much more complicated. You’re not just grieving the loss of the person, but grieving the loss of everything else as well.

Everyone has heard about the 5 stages of grief. Denial, anger, bargaining, depression and acceptance  I have since learned that Kubler-Ross came up with the stages through observation of terminal patients. She never intended it to be a road map if you will of the grieving process. These were stages terminal patients were observed to go through when confronted with their own death. They weren’t linear or orderly and weren’t meant to describe the grief of those left behind. I think the misunderstanding of the intent of the stages complicates matters. I’m learning through my groups and interactions that bereaved parents are often expected to “move on”, “get over it”, not stay “stuck” in their grief. They are expected to move through the stages and then in a year or so are expected to be just fine. But they’re not just fine. Three, five, ten years later the pain and heartache is still there. They may have learned to live with it and maybe have started living again rather than just surviving, but they long for their child just as much. Attitudes like that towards grieving parents is isolating and makes the parents feel like they are abnormal, unhealthy, or should be medicated. So far I have been fortunate not to experience the negative attitudes but this is still very new or fresh. I have no idea what’s coming down the road and I would find it extremely hurtful if I was on the receiving end of comments such as those. When your child dies, a part of you dies with them. No amount of time can fix that. No amount of time will make it okay that your child died before you. No amount of time will heal that wound, cure the sadness, cure the longing. Just think about how much you miss your child when they are at camp, or when you go away and leave them behind for a week, or when they sleep out or are at their other parents house if parents aren’t together. Now imagine that, forever. Knowing you will never see them again. Time will not make that better.

I do think those stages have a place when describing grief, but not in a prescriptive way. They help to describe what someone may be experiencing but should not ever be used to prove to someone that they are “stuck” or should be in the next stage by a certain point in time. Everyone experiences grief differently and should not be held to some standard timeline. Some may experience all the stages, some may experience only one or two. You could go through all the stages in a single day, experience multiple stages at the same time, or stay in a stage for weeks. Grief is so much more than the stages. It manifests differently from day to day, hour to hour. Grief is being on the verge of tears all day some days but barely crying other days until a trigger sets you off. Grief is being irritable, getting frustrated with the smallest things. Grief is feeling lonely when you are in a room of people. Grief is physical pain and illness; nausea, headaches, body aches. Grief is being afraid to talk because if you talk, you’ll cry. Grief is antisocial. Being unable to make small talk, or smile when someone talks to you, unable to say okay when an acquaintance asks how you are. Grief is anxiety. Being afraid to do anything because you don’t know when the grief wave will overtake you. But. Grief is necessary. The pain, the sadness, the grief cannot be pushed aside. No matter how long it takes being with the grief is the only way to eventually survive. Do not try to hurry someone along their grief path.

The unconditional support I’m receiving is the only reason I’m surviving right now. I have a list of people I know I can call or text anytime and they will be there. But surprisingly the one helping me quite a bit is a friend of Ariella’s. She texts me everyday just to tell me about her day. These are the things I’m missing and I thought it would hurt too much coming from her friend and not her but it’s actually quite nice. I don’t think she realizes she’s helping me (well she does now), I think she likes maintaining a connection in a different way to Ariella. I took her to lunch today and it felt nice to have a conversation with someone Ariella’s age. We talked about Ariella a bit but she didn’t dominate the conversation. Her friend is a way for me to have a different connection with Ariella as well. She is a very sweet and caring soul. Ariella was lucky to have her. She even bought me the perfect gift. A necklace with three little birds, like the song, like the painting Ariella did, like my tattoo. Don’t get me wrong, I wish with every ounce of my being that I was taking them both to lunch. It isn’t easy to hear about the things her friends get to do. But I miss that life. I miss those conversations. I’m glad that in some way I can still be a part of that world.

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Trust

Ariella trusted us. From the time of diagnosis she trusted that we were making decisions based on her best interest. She dreaded chemo, dreaded radiation, dreaded all of it but she never really argued about it because she trusted us when we said it was what she needed to do to get rid of the cancer. We never kept things from her. When she was getting ready for her limb salvage surgery she knew it was a possibility she would wake up with part of her right leg amputated. But still she trusted us that the surgery was the right decision. We never promised her she would be cured. But we always said the doctors were doing everything they could. When treatment was working we shared that and when it wasn’t we shared that as well. She never lost hope because there were always other options. I remember one day getting scan news that wasn’t what we wanted. When I picked her up from school and told her about it and told her treatment would be changing she said “that’s okay, at least I still have options.”

When it came time for the bone marrow transplant Ariella was understandably scared. She knew about the radiation prior and the high dose chemo that would once again make her feel lousy. But once again she trusted us when we told her she would get through it just like she got through all her other treatment and it was her best chance to get rid of the cancer once and for all. And she went into the hospital with a positive attitude. Up until she started feeling the affects of the chemo she was dancing and singing with friends, playing games, roaming the hospital, and playing pranks. She was no longer scared. She trusted us and the doctors that all would be okay.

This is one of the images that plagues me. Ariella so hopeful and optimistic in the hospital, acting like she didn’t have a care in the world. Ariella receiving the bone marrow without complaint. Ariella and I watching TV and hanging out in her hospital room just talking and cuddling in bed together. Getting texts from Ariella when I wasn’t there. All that time just waiting until her blood counts came up so she could get out of there and get on with her life. She trusted me when I talked about all the things we would do once she had clearance from the doctor. She had no doubt at that point that everything was going well and it was just a matter of time before she would be sprung from Hopkins.

I guess this goes along with my regret and guilt. Ariella trusted us that the bone marrow transplant was the right thing to do and yet it ended up being the cause of her death. We let her down. We made the wrong choice. Yes I know hindsight is 20/20 and we made the best choice we could have with the information we had at the time but that still doesn’t change the fact that the two people who are supposed to keep her safe failed to do so by authorizing a treatment that has known severe complications. I see her happy and okay one minute and then everything changed in the next when she was intubated and scared she was going to die and always had sad eyes. And we couldn’t effectively comfort her. We couldn’t keep her safe and we couldn’t make her feel better.

Along with a lifetime ahead of missing Ariella and missing the memories we will never get to have, I have a lifetime ahead of having to live with those images of Ariella with sad eyes in the ICU, wondering how it all went so very wrong. She thought she would be fine, she’d get through BMT and have a lifetime of fun and friends and dancing ahead of her. At some point in the ICU she realized that was not the case and she might not be okay, even though we told her she would be. I made it a point to never lie to her about her illness but I didn’t think I was lying when I told her she would come through BMT just fine. I never thought death was a possibility. I just hope she never blamed David or me during that time. I know I blame myself enough. If only, if only, if only.

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I Miss…

I’m done, fried, exhausted. I honestly don’t know how I’m going to survive this. I don’t want to survive this. Everything hurts. Everything is a reminder of what I’ve lost or of what I’ll never get to experience in the future. I am aware 24/7 of what’s missing. I go to the gym for some distraction. Sometimes it helps. Most times I’m fighting back the tears even during my workouts. But that is the only thing that has remotely helped. So I keep going. I hate this. I hate everything about this. Each day is worse than the one before it. I don’t want this life.

Running through my brain on a constant loop are all the things I miss. I miss brushing and playing with Ariella’s hair. I miss watching her do her hair and make-up. I miss driving her to clinic appointments. We had some fun car rides and great conversation on those drives. I miss picking her up from school and hearing about her day. I miss helping her with her homework. I miss the sleepovers the two of us used to have in her bedroom. I miss movie and game nights. I miss watching her dance. I miss doing her make-up for dance competitions. I miss listening to her sing in the shower. I miss having her friends over. I miss taking her to Build-a-Bear. I miss delivering bears with her. It’s definitely not the same without her. I miss our vacations and day trips and seeing musicals together. I miss watching her swim in the pool and the ocean. I miss watching her on amusement park rides. The bigger and scarier the better. She was fearless. I miss watching her make up dances. I miss cooking for her. I miss her hugs and kisses. I miss her voice. I miss hearing her say “Mommy” and “I love you to the moon and back infinity times.” I miss going to her school activities and buying school supplies. I miss going for pedicures together. I miss her pranks. I miss her energy, her noise. I miss hearing her shows on the TV. I miss reading to her and I miss us reading quietly together. I miss helping her with her crafts. I miss riding bikes together and watching her play outside. I miss her messy room. I miss the silly faces she used to make. I miss how she had to completely clean her fork before using it for a different food. I miss how she was always spinning. I miss how she wiggled her tush. I miss her smile and her laugh. I miss her attitude and eye rolls. I miss hearing her yell in frustration when she was having trouble with her homework. I miss her arguing over nothing. I miss her company. I miss her presence. I miss how she took forever to do anything. I miss her comfort when I wasn’t feeling well. I miss her weirdness. I miss driving her to the dance studio. I miss our conversations. I miss her silliness and goofiness. I miss going places like the zoo and aquarium and science center and museums. I miss taking her ice skating. I miss taking her to baseball games and soccer games and concerts and mini golf. I miss binge watching shows with her. I miss going out to dinner with her. I miss stalking the camp website for pictures when she was at sleepaway camp. I miss taking care of her. I miss her needing me. I miss the days when she was giving us a very hard time. Her 8th year was a rough one. How naïve I was. We had no idea how bad it could really get.

I miss a lifetime of future moments we will never get. I miss watching Ariella get ready for her first date. I miss her Bat Mitzvah (was scheduled for 9/26/20). I miss teaching her to drive. I miss helping her get ready for prom. I miss watching her graduate high school. I miss sending her off to college. I miss watching her graduate from college. I miss watching her start her career (she wanted to be a nurse). I miss planning a wedding and having grandchildren. And I miss all the everyday moments in between.

Before I have said I’m surviving, but not living. But the truth is I don’t really think I’m surviving. I guess if by surviving one means waking up each day, then I am. But the pain and heartache constantly knocks me to the core. I’m not very good company, even for David. I barely talk, mostly just to answer questions. I don’t do much of anything. I may read, mostly grief books but sometimes other mindless type reads. Or I just lay around with HGTV on in the background. I can’t fake a smile for strangers and the thought of doing almost anything besides going to the gym and maybe seeing some friends terrifies me.

As I’ve mentioned before many bereaved parents have said they eventually did find joy, they did find a purpose, a reason to live. But the minimum amount of time I’ve seen before that happened was 4 years, often longer. Four years! Four years at least of feeling like this. That alone is terrifying. It hasn’t even been 3 months and I’m wondering if I will make it through. Every moment of my life right now is plagued with sadness and despair. This is no way to live and it’s already taking its toll. How? How am I going to survive this?

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Not Okay

Every time someone asks me how I’m doing I usually respond with “okay” or surviving”. The truth is though, that while I guess I am surviving I am not even close to being okay. I’m either not doing well or worse. There is no okay about it. Even when I look okay I certainly don’t feel okay. Words cannot begin to accurately describe how I feel. Words like shattered, heartbroken, devastated, broken, anguished, despairing, wrecked, traumatized and crushed could be used to describe how I feel but even they don’t grasp the depths of the emotions. I feel all those things to the extreme. What I do know is okay is not an adjective that fits. There is nothing okay about this. There is nothing okay about how I feel. So when I see you and tell you I’m okay, know that I’m really not. I don’t know when I’ll be okay again.

I’m sitting in Starbucks waiting to meet someone. Now playing on the radio is Elton John’s Tiny Dancer. A song played at Ariella’s funeral. Cue waterworks. How am I supposed to function in life when I can’t go in public without the threat of tears? How can I function when the smallest thing can trigger that huge wave of grief to come crashing over me? I did visit Ariella before coming here and asked for a sign. Maybe this is my sign. I don’t know. But it hurts.

No one really knows what to say to a grieving parent. Hell, I don’t even know the right words to say because there are no right words. And that may make it difficult to approach a grieving parent. That may be why grieving parents tend to lose friends and family. Because they stay away because they don’t know what to say. Don’t say nothing. That is isolating for the grieving parent. But be honest. Say “I don’t know what to say.” Say “I’m here for you”. Say “I’m listening.” Say “I’ll sit with you. We can talk or not.” No words are going to give comfort but your presence just might. We used to have a mailman that we talked with regularly. He did our route for years. He knew us and Ariella and always made sure to chat with us if we were outside when he was bringing the mail. He was also my father’s mailman and when my father was in Florida he always checked on him, asked how he was doing. After Ariella was diagnosed he always asked after her as well if he didn’t see her. We hadn’t seen him for a while recently and I guess his route changed. He knew Ariella had relapsed last year but we hadn’t seen him since she went in for bone marrow transplant so he had no idea about the ICU or any of it. One day a few weeks ago David saw him and he asked after Ariella. David had to tell him. The next day he was on our route again and he went out of his way to knock on our door to express his condolences to me. He didn’t say much. He didn’t know what to say. I don’t even think he said as much as sorry. Because he knew. There are no words. He just gave me a hug. And that was all that was needed. I know that had to be hard for him. Many just avoid the grieving parents. But he didn’t. Even though he didn’t know what to say he made sure to be there. To let us know he was there. Even when he didn’t have to.

I know most people are well-intentioned so I didn’t want to do a “what not to say.” But some things have been said to me that really rub me the wrong way. Not only do they not help, but I even found some of them to be hurtful. Things like “she’s in a better place.” I disagree. I cannot conceive of a better place for a child than with her parents. Whatever your beliefs, they are not mine. “G-d needed another angel” or “it’s in G-d’s plans” or any other reason having to do with G-d. Again that is not helpful at all. Because I don’t care what G-d’s plans are. Our daughter should be here with us. To me there is not a single good reason for a child to die. None whatsoever. Nothing about G-d’s plan can make up for not having our daughter here on earth with us. “Everything happens for a reason.” Another nope. Again there is no good reason for a child to die. And say there truly is a reason, to make parents suffer a lifetime without their child until they find out the ultimate reason or plan is not okay. If it truly is G-d’s plan (which I don’t believe) I want to know it right here, right now because this life I’m living, without reason or purpose, is torture. Any sentence that starts with “At least…” There is no single “at least” out there that will make the death of my child worth it. None, zero, zip, zilch. Again, I know it’s well intentioned but it really bothers me when it doesn’t occur to people that my beliefs may be different than yours. I’m not sure how many times I’ve been told that Ariella is okay because she’s with Jesus. We are Jewish, not Christian. Our beliefs about G-d and the afterlife are different. Telling me she is with Jesus completely disregards the fact that there are many religions out there with different beliefs so to just assume we believe the same thing is not okay. Comments like that are not helpful in the least, even if that’s what you believe. I’m happy for people who have strong faith because I just don’t anymore but putting your faith on me doesn’t provide comfort or peace. A simple “I’m sorry for your loss” will suffice.

Finally, if I’m talking about how hard things are or how poorly I’m doing, don’t turn around and make my grief about you. Don’t tell me you are feeling the same way about the loss of Ariella. Because you’re not. Only David can tell me that. We understand that everyone who knows and loves Ariella is sad and grieving in their own way. But it doesn’t compare to what David and I are going through and we cannot carry anyone else’s grief. No matter how much I write, how much I try to explain, no one other than parents who have been through this can begin to really understand how we are feeling. I am exhausted and can only deal with my feelings right now, and David’s. I don’t have the energy to comfort others. Just agree with me that it’s shitty. That it sucks. Don’t try to fix it by using meaningless platitudes or telling me that you feel just as awful. Don’t diminish my feelings by trying to make them go away. You can’t fix it, you can’t make me feel better. I can’t speak for all grieving parents but I do think it’s safe to say that most just want a comforting presence, someone who will listen or just be willing to sit quietly, and who will agree that the situation is horrific without trying to fix it.

I know people who make the above comments are just trying to provide comfort without really knowing the right words. But those comments do not take into account the fact grieving parents may have different beliefs than you. And all any grieving parent wants is to have their child here with them. Nothing else will make it better.

This post is kind of all over. But that’s how I’ve been lately. My mind doesn’t focus on one thing. I get distracted and can’t focus on anything and my mind wanders. I guess I’m just saying this to remind anyone who sends messages or texts, that if I can’t respond immediately I most likely will forget to respond. I’m not ignoring you on purpose. My brain just isn’t functioning well these days. Don’t take it personally.