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The Trek

Just a note, some day for the next month you may get more than one post if I share my writing course writing and have something else to write about. Today is one of those days.

The next couple of months are filled with events or activities that will be hard to participate in but powerful and hopefully therapeutic. Today was one of those events. Justin Berk is a meteorologist in Maryland with a very large social media following. He had gotten involved with one of our local cancer organizations and as part of his fundraising efforts he does a trek across the state of Maryland, walking and biking. The trek is grueling in the hot August sun but he frequently reminds his followers that he and his fellow trek team have a choice to do this. Kids fighting cancer undergo unbearable and toxic treatments without the option of stopping. He and his wife Shannon have since formed their own non-profit to support children fighting cancer (Just in Power Kids) but he continues to do his trek. Each day of the trek is in honor of a child fighting cancer. Ariella was honored in 2017 and 2018. This year she was recognized as one of the “in memory of” children.

Starting last year they incorporated children into the trek by having a “kids trek too” day where children can join Justin and his team on a trail for a two mile walk. Last year I brought Ariella to the trek. She was in a wheelchair, proudly showing off her scars from her external fixator which she had removed just two months prior. She had a blast, talking with Justin almost non-stop for the two miles. I finally met in person some families who I felt I already knew quite well. It was such a great, feel good experience.

This year was much different. I wasn’t sure I would be able to go but David certainly wanted to. And Justin and his wife Shannon have supported us and Ariella so of course we wanted to support them and their charity. Not only had they honored Ariella in the trek twice but they spent time with her at our house and then in the ICU as well. Shannon responded to texts from Ariella looking for advice to manage her side effects. She also made sure to be at the hospital the day Ariella died. They are good people who are doing amazing things for the community and we felt pulled to be there. Some friends of ours were there and some friends of Ariella’s. We got to see our friends who will always be family. We got to see the hope in kids who are in remission or still fighting. We feed off their spirit. They are the strong ones. Not us.

But. Ariella should have been there. This year maybe she would have been able to walk rather than ride in the wheelchair, complaining the whole way about the heat. It was a kids trek and there David and I were, without a kid. Her absence was crushing. It was quiet without her. Seeing the other kids and families just another reminder of what we are missing (not that we ever forget but here it was, in our face). At the end of the trek, when Justin spotted me, he couldn’t hold back his tears when he pulled me in for a hug. He is sincere. He and Shannon care about every child they meet and trek for. And they are supporting Ari’s Bears. In fact, the kids were able to earn prizes and one of the options was to choose a bear to donate. We had to be there. Here’s the thing, once these people are in your life, they are in your life forever. I’m not just talking about Justin and Shannon but anyone you meet in the cancer world. You support each other. Even when you are going through hell. Because they are going through hell too. They are the only ones who truly get it. And anyone who is trying to make the lives of cancer kids better needs our support as well. Too many people look away, don’t want to face it, don’t want to imagine their child sick or dying. But David and I will be there no matter how hard it is. Ariella was there supporting others even when she was sick. She would want us to do the same. And she liked Justin and Shannon and maybe, just maybe she was following along the trek as well. Apparently the trek team viewed rainbows several days in a row.

We have some other things coming up that are also going to be quite challenging. David and I are heading to a bereaved parents retreat in Arizona. I am not sure what to expect. I hope it’s therapeutic, I am sure it will be hard. I don’t know what I hope to get out of it. Mainly I just want to connect with other parents who “get it.” And this is specific to cancer. And I think that makes a difference in being able to relate, at least right now when it’s still so fresh and raw.

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The Truth about Grief

No matter what I say, how I look, or what I do, I am not okay.  I am almost always on the verge of tears, unable to predict what will ultimately send me over the edge. 

Though I may be out, interacting, and doing seemingly normal things, it is sapping all my energy and all I really want is to be at home buried in my blankets.  I can’t go anywhere without an escape plan. 

No matter where I am or who I am with most of my thoughts are filled with Ariella.  Even if Ariella was never a part of a situation I may be in, I am thinking of her. She never leaves me. In fact in some ways she is more present now than when she was alive because my mind revolves around her.  What she should be doing, what she is missing, what we are missing, the future we no longer have. Every situation, every activity, every single facet of my life I am aware of her absence. No matter what I try to do to distract myself, no matter how distracted I seem, she is there, in my mind, in my heart, in my soul.  

Every single day I beg and pray to die so I can be with her and end this pain.  Even if I manage to have a day with some smiles and laughter. Every time I hear of a fatal accident, or someone that died of a heart attack or freak accident, I think “why couldn’t that have been me?”  I don’t want this new life of mine.

There is no moving on, no getting over this.  I will never get over the death of my daughter. I will never move on from Ariella.  At most I can hope to learn to live with it and come out of this depression that squeezes me tightly in its grasp.  

I am not living, I am only surviving (barely).  I feel like I have nothing to live for and am just existing to get through each day until I can go to sleep again.  I don’t understand the point. There is no point. What is the reason for living if there is no purpose, no joy, when your whole goal is to just survive another day while in the throes of deep anguish?

I suffer from PTSD.  I have frequent flashbacks of Ariella in the PICU.  There is no warning and each time I feel like I’m punched in the gut, I want to throw up, scream, yell, drop to my knees.  I’m not always in a place where I can do that. These are extremely traumatic images and I can’t escape them, I can’t choose not to see them.  My heart shatters again and again every time I see her in that hospital bed, sad and uncomfortable and scared. I would trade my life for hers in a heartbeat.  

Grief is more than just feeling sad.  It invades every part of your life, seeping into the farthest corners of your body and mind.  My body physically hurts, all over. I feel nauseous much of the time. I get frequent headaches.  My body shakes. My appetite changes constantly. From no appetite at all to I can’t stop eating. I can’t concentrate on anything for very long.  I lose track of conversations, stop hearing what someone is saying, lose my train of thought. My brain is in a fog. I can be in an aisle of the grocery store and forget what I am doing there, forget what I am looking for. It’s hard to pay attention to things around me, impossible to multitask.  My memory is shot. I forget to do simple daily tasks, return a text, send an email.  

Any excursion out of the house is fraught with anxiety. I am in a constant state of fight or flight.  Who am I going to have to talk to? Who will I see? Will I have a breakdown? Will I have to tell someone who doesn’t already know?  What will trigger me? I am constantly dodging landmines.  

I am forever changed by Ariella’s death.  I will never be the happy, content person I was before she died. I’m afraid to see who I will ultimately become. 

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I’ve Changed

My brother in law and sister in law kindly registered me for the Writing your Grief course I wrote about previously. Each day for 30 days we get emailed a prompt to write about your grief. Depending on the prompt and how I felt while writing I will share some here. This is another way of examining my feelings and process and more of my truth that I promised to share. Just a note that I will not share the actual prompt from which I am writing. Below is the first one. Some things I have said before in my posts (which I imagine will be the case for many of the writings) but it’s more unpolished, unedited, just writing from the heart based on the prompt.

My favorite name was Mom, Mommy, Mama.  No one calls me that anymore. I used to be content, happy.  Was so grateful for my life. We had the perfect family. Before we had our daughter we always thought we would have at least 2 children (my husband wanted 3).  But after Ariella was born our family felt complete. I always wanted a daughter. She was happy, healthy, and the perfect child. Of course she wasn’t perfect but she was kind, generous, funny and a good kid overall.  I was blessed. Never thought bad things would happen to us. I felt so lucky.  

Even though I had and still have a strong relationship with anxiety I wasn’t a huge worrier when it came to Ariella.  I guess I just thought everything would always be okay. My anxiety was related to me, not my family and I loved being a mother and loved our mother daughter relationship.  Even though I am introverted I loved to get out and do things. We always had fun family activities planned for the weekends and my husband and I enjoyed going to wine festivals, concerts, out to dinner, etc.  We kept busy. When not doing things as a family Ariella and I often did mother daughter activities. Canvas painting, painting pottery, trips to NY, musicals, hiking. I found pleasure in the big things and the little things. I was motivated to get out of bed each day.  I wanted to fill my days with fun activities. I wanted to interact with others (to a point, as I mentioned I am introverted). Life had meaning. I had a purpose, a reason to live. I felt that purpose. I was also happy to go to work. I work with children and found my job to be meaningful as well. I took pleasure in beauty.  Sunny, warm days. Nature. Beautiful scenery. I was happy for others when good things happened to them. I wanted to celebrate everything. I wouldn’t have changed anything other than my anxiety.  

 But as is human nature I also complained about trivial, petty matters.  I was easily irritated by things like long lines and traffic. I got caught up in the things that don’t really matter.  

Now.  There is none of that person left except for the anxiety which has increased threefold.  I am miserable. I hate my life now. I feel like I have zero purpose or reason to live. I haven’t been back at work yet, I return at the end of August and I think that rather than deriving meaning from my job the only benefit will be that it forces me out and helps me get into a routine.  I force myself out of bed each day and exercise but that’s it. I am not motivated to do anything else. I do meet friends for lunch or dinner but really nothing gives me pleasure. Nice days piss me off because they don’t match my mood. Nice days were family days. The three of us would do something outdoors like the pool or hikes or festivals.  I have no desire to do any of that now. I can’t even imagine enjoying the things from which I used to get some pleasure. I’m not present in my life. I’m just going through the motions. I never understood depression. But I get it now. I used to want to live a long life. I used to be afraid of dying. Not now. Now not only do I not fear death, but I would welcome it.  

I am now extremely jealous and resentful.  It seems like everyone else has what I want.  I’m jealous of the intact families. I’m jealous of the children that get to go on living.  I’m jealous of the mothers with daughters. I’m jealous of the childhood cancer survivors. They are still alive. Their parents still have hope.  My hope is nonexistent. I don’t want to celebrate anyone else. Don’t get me wrong, I don’t want bad things to happen to others and I want every pediatric cancer kid to survive.  But I’m also resentful that it wasn’t my kid that survived. And it’s hard to celebrate others when I feel like I have nothing to celebrate.  

The only positive aspect of my new persona is that I no longer care about stupid shit.  None of it matters though I don’t think I needed the death of my only child to prove that. Even though as I mentioned I did complain about minor things I tried to avoid that as much as possible and in general was an optimistic person.  Now I am cynical and pessimistic and feel like nothing will go right for me from this point forward. I feel like the universe is conspiring against me. I also realized that the people that aren’t there for me do not deserve my time or energy. In truth, some who aren’t there really don’t surprise me but previously I would still make an effort or try to see them on holidays and whatnot.  Now I don’t give a shit, whether they are family or not. I’m not going to waste my time on people who have not made an effort for me. I used to do everything in my power to avoid confrontation but I’m not afraid anymore to tell people how I’m really feeling. Not sure if this is a positive or negative change.  

I am writing about the grief of my daughter but my father died in February 2016, one year to the month before Ariella was diagnosed with cancer.  I was very close to him and devastated by his death but it didn’t rock my world like the death of my daughter. I wasn’t expecting him to die when he did (he wasn’t young but not super old but did have heart issues) but his death wasn’t out of the natural order of life.  I wasn’t angry, bitter, shattered or resentful when he died as I am now after the death of Ariella. I was sad and heartbroken but his death didn’t change me the way Ariella’s did. I do not at all like the person I have become. I hate this new version of me. It doesn’t feel like me at all.  I don’t know what to do, how to fill my days before I go back to work. I don’t know how to find happiness and right now I don’t want to find joy. This pain is real. This pain is tangible. This pain keeps me connected to Ariella.  

I used to be a kind, happy, and friendly person.  Now I am depressed and can barely give a smile to a stranger.  I used to enjoy life and look for things to do. Now I don’t want to do anything and don’t take pleasure in any of the things I used to. I used to be a caretaker, a nurturer.  Now I’m the one who needs to be taken care of. I don’t relish that role. It makes me feel less than, diminished. I don’t know who I am anymore. I don’t recognize myself.  

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Collecting Signs

By now most of my readers know that I am quite skeptical when it comes to signs. But when your child dies you cling to any remote possibility that they are still around, can still hear you, and that you will one day be reunited. You desperately try to find some meaning and hope in a completely senseless situation. So I do keep my eyes open for signs. I collect signs like others collect coins or baseball cards. They give me a glimpse of hope, a little bit of light. I can look through them when I am feeling especially down. I frequently see the letter A, mostly in clouds but have seen it with sticks and straw as well.

  • Did not get a picture initially and as I continued my walk was thinking I should have taken one. When I made my way back about 15 minutes later was sad to see 3 cars drive right over it but surprised to see it still there and intact even with the cars.

Another commonly mentioned sign is deer. I don’t put too much stock into that since there are often deer in our neighborhood. However there has been a deer lately that has allowed us to get fairly close and the other day she was there with two babies. She has been hanging out in plain sight for quite a while lately and even when we get too close she doesn’t stray too far.

I have been seeking out grief books and blogs, especially ones written by bereaved parents. Most mention signs. They say to ask for signs. One mentioned to ask for crazy signs, things that are completely random, like she did with a purple elephant. And sure enough she got her sign. So I decided to try that. I asked for a purple elephant.

And there is my purple elephant. Spotted in a store in a part of town I almost never visit. I’m trying to keep an open mind. The other night we were outside on our deck and had a lit candle on the table. The flame grew quite bright several times. I wasn’t the only one who noticed it. I said maybe it’s Ariella saying hello. And after that it didn’t happen again even though we were out there a while longer. Maybe she was trying to make her presence known and once it was acknowledged she knew she could stop. We will never know. Well maybe we will one day? I still see 11:11 and the number 11 quite a bit. I had lunch with a friend the other day and I looked at the total on the register and it was $11.11. I see big yellow butterflies all over but it’s summer and butterflies are common. Not sure if that’s a sign. I did ask for a blue butterfly which I see less frequently, and one flew quite close to me and landed on a nearby bush with its wings spread so I could clearly see the blue. The next day one appeared on a TV show I was watching. Ariella really liked the song High Hopes and I hear it most days in my car. I first started thinking of that song as a sign when I heard it multiple times a day soon after she died and quite often when I had been going to or leaving the cemetery. And I heard it the other day at the baseball game. I don’t think I have ever seen a hummingbird up close in person. Last night when I opened the front door there was one just hanging out there, looking toward the house. I didn’t even realize what it was at first and once I noticed it, it flew away. Signs or coincidences? Not sure that we’ll ever know but I will keep asking for random signs and see what happens.

Seeing what may be signs does not make it any easier to live without Ariella. I like the idea that she is still around but that does not change the fact that her physical presence is missing. She is not here to hug and kiss and nurture. She will never grow up, never have all of the opportunities of which she dreamed. There are so, so many things I will never get to do with her and nothing will change that. If the signs are real what they do is reassure me that Ariella’s eleven short years were not it for her. Because it is impossible to come to terms with the fact that Ariella or any child that dies only gets to have such a short amount of time and that’s it for them. Her work here wasn’t done, she was only just getting started. She had so much good left to do. Eleven years is not enough and maybe, just maybe, she’s able to continue doing her good wherever she is.

And of course if she is able to send signs then she has a cognizance of our world and knows that we need to hear from her. And that though she is physically gone she is spiritually still alive and that means one day we will be together again. I just wish that day would come much, much sooner rather than later.

I don’t know what it will take for me to truly be a believer. Just about any of the signs I have seen/mentioned can easily be explained away. But as I’ve said I am grasping at anything to keep me going.

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Good and Bad

This weekend was both good for my soul and extremely hard. David had college friends in town, a married couple, and they are very good people. They drove in (with others) for Ariella’s funeral without hesitation (which is more than I can say for some people who without a doubt should have been there) and since the wife was about an hour away all week for a conference, her husband drove in Friday so we could spend the weekend together. It was good being with people who did not know Ariella. A lot of my friends became my friends because our kids were connected. That’s hard. A constant reminder for what Ariella would be doing if she were still here. This was different. We aren’t in each others’ worlds because of kids. They do not even have children so conversation was very different.

We had a grand old time. We showed them Baltimore (the good and the bad), took them to an Orioles game, and introduced them to Maryland crabs and snowballs. A great distraction and I really was distracted for a while. But all of a sudden it was just too much. I just couldn’t be “on” anymore. I wasn’t pretending when we were together. I was “okay”. As okay as I can be right now. I definitely wasn’t my old self but I also mostly wasn’t on the verge of tears either. And that’s the thing. I need to have time to be sad. I need to have time to be with my feelings. I need time to just be. Distraction is good and it’s bad. When the thoughts and the feelings are hidden for too long they build up and I feel like I am going to explode. Every emotion and feeling will just come spewing out. And I reached that point. I was done. Kaput. Could not take anymore. Just wanted to curl up in bed and hide from the world.

I am spent. Engaging with the world is exhausting. Interacting with others is exhausting. My body physically hurts all over. There is no end to this nightmare I am living. I appreciate the moments of distraction. But I pay the price for them later on. I miss who I used to be and I know I will never be that person again. How do you continue living when you don’t like who you are or the life you have?

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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?