Author: stein28

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The Days Keep Dragging

Another calendar month has come and gone. People keep remarking how fast the summer is flying by. For me it’s dragging. Every day is a lifetime filled with nonstop thoughts of Ariella. The thoughts change but are always about Ariella. About what we are missing. About how much I miss her. About how much I want to hear her voice and tell her about my day. About her days in the hospital. About what we could have done differently. She is all around me. Everything is a reminder. And I mean everything. Nothing is safe. She is a constant in my life no matter what I am doing or where I go. Some thoughts are happy memories though they make me sad, and some are tragic. Doesn’t matter. I can’t escape them. 24/7 I am missing my daughter. I count down the minutes until I can go to sleep once again. I survived another day. But then I wake up. Another day to get through. I force myself out of bed. I run or go to the gym, the only thing that remotely helps me right now. And I try to fill the rest of my day until I can sleep again. The summer can’t end soon enough. I’m anxious about going back to work but at least my days will be filled. I’ll have a routine. I’ll have no choice but to get out of bed. I’ll have no choice but to keep myself busy at my job.

Work though is going to bring its own set of worries. I work with children. Everyday I’ll interact with children near Ariella’s age. I will watch them learn and progress and grow. Some of my students I’ve known for several years. They know I have a daughter. They ask about her. They didn’t know she was sick. How do I respond when they ask about her now? Some of them are the same age, in the same grade Ariella would be. How? How am I going to watch these kids learn and experience all the things Ariella will never get to experience? I love my job and I love my students but this is going to be a real test. And not just the interaction with the kids, but interaction with the staff as well. I work in multiple schools so I don’t get to know staff at any individual school very well. But they are aware of the situation. I am mostly in the same schools as last year so I am dreading the first week or so back, having those conversations with people I don’t know all that well. I just hope that it’s far enough out that when they see me it’s not immediately on their minds. I am relieved to be in the same schools because the thought of adjusting to new schools on top of everything else was increasing my anxiety about going back. At least I’ll be dealing with the familiar (other than one new school).

I’ve got a little over three weeks left to fill before I go back to work. I’ve had so many offers for lunch, dinner, etc. and I appreciate them, I really do. I can’t accept them all. While doing nothing isn’t good, doing too much isn’t good either. I pay for it later. Interacting with others is exhausting. Making small talk is exhausting. No matter who I’m with it always hits me what I’m missing, what our lives are missing and as soon as I leave, the world comes crashing down yet again. I’ve always been introverted and even more so now I prefer to be alone most of the time. It’s actually quite the conundrum. I want to be alone but I need to fill my days. I don’t want to just mindlessly stare at the TV all day but I don’t want to go out and do much of anything. Nothing is the right thing so I am trying to find that right balance of not shutting myself completely off but also not exerting myself too much.

I never understood depression before. Anxiety and I had/have a very close relationship, I know anxiety quite well, but was not so familiar with depression. I just didn’t understand how life could feel so bad that one would have no motivation to do anything or be able to take pleasure in various experiences and activities. It made no sense to me. No matter how bad things seemed there was always pleasure and happiness to be had along with the bad times. I get it now. The root of the depression may be different, mine being situational, but I fully understand lack of motivation and being unable to experience joy. It is a dreadful way to live, feeling like there is no reason to keep on going. What is the point of living without happiness, meaning, or purpose? Why suffer through that? If anyone has the answer to that I’d love to hear it.

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Chaos Theory

I’m sure everyone is familiar with Chaos Theory. That one very small change early on can cause a much larger difference in a later state. I often wonder how this plays into Ariella’s illness and death. If we had caught the cancer sooner, when she first complained of leg pain, would this have changed her outcome at all? Would she have responded better to the chemo? Would she still have relapsed or would have starting treatment earlier changed that? Her scans that showed the relapse were done on a Friday. If we didn’t have the scans until the following week would that have changed anything? Treatment would have started a bit later getting meaning her bone marrow transplant would have been a bit later. Would that have changed the ultimate outcome? Maybe she wouldn’t have been exposed to the flu. Maybe she wouldn’t have gotten so many infections. Maybe, maybe, maybe.

We of course will never know if the outcome would be different. But these “what ifs” torture me. They frequently pervade my thoughts. I replay all the various scenarios over and over. If only we had done this, or if this one thing didn’t happen then maybe the rest of it wouldn’t have. It seemed like we were in the midst of this perfect storm where Ariella was getting bombarded with every possible infection and complication. What if just one variable had changed? What if just one thing had been done differently? Would we still be here without our daughter?

People are going to say to stop doing this to myself. It was nothing we did or didn’t do and tormenting myself about it won’t change anything. Logically I get that. Running these thoughts through my brain over and over does not serve any purpose. And yet I cannot stop. Because the thing is, Ariella dying never once crossed our minds when we were considering bone marrow transplant. I fully believe that one small change initially would have altered the outcome drastically. Whether it was the timing of transplant, administering of different meds sooner, a different doctor on duty earlier on in the ICU stay, etc. And this only contributes to my anguish. Because her death, at least following transplant, did not have to happen. And I will never come to terms with it.

If only we could turn back time. I’m actually not sure where I would turn it back to. Maybe to when she very first started complaining of leg pain. If we caught the cancer sooner maybe she wouldn’t have had any of those micrometastatic cells that didn’t respond to chemo. I’m not sure I would turn it back to when she relapsed. I don’t know that we would do anything different except maybe start alternative treatments sooner. I would turn it back to BMT and not do it. But once again, who knows what effects those changes would have on the greater outcome? I am sure that if we could go back and not do the transplant Ariella would still be with us. I can’t say for how long but could have been a lifetime.

Not only am I facing a lifetime without my daughter, without the person that completed me, but I am also facing a lifetime of questioning every decision that was made. If only, if only, if only.

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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.