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?

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.

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.

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.

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.

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.

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.

Baseball

Baseball games are fraught with memories. From a young child some of my favorite memories are of going to baseball games with my father, including when the Orioles won the world series in 1983. David and I carried on that tradition with Ariella, bringing her to games from a very young age. None of us are huge baseball fans but we always enjoyed the atmosphere of the games. We like the food, the energy, the music between innings, and the overall excitement. So with the memories of the games with my dad, the memories of the games with Ariella, and the memories of the games with my dad and Ariella together, I knew I was taking a risk going to an Orioles game. I also knew that I didn’t want to lay on the couch and stare blankly at the TV while David went to the game. So I told myself it would be okay, we would be among good company, and if nothing else it would get me out of the house.

And it was okay. The company and food were good. Better, the company and food were excellent. Yes there were tons of memories at the stadium but they didn’t take over. That’s the thing, I never know what I will be able to tolerate and what will sucker punch me in the gut until I’m in the situation. But even though the memories weren’t in the forefront, I just couldn’t find myself caring at all about the game or really enjoying myself. To be fair, the attendance was paltry so the energy overall really wasn’t there. In fact David and I were hoping to see the other team pull off a no hitter since the Orioles were playing so dismally. But really, I was just going through the motions. When previously I would dance between innings, get into the music and get into the atmosphere, now I just felt blah. I had no interest in any of it. And Ariella should have been there. I was missing trying to embarrass Ariella with my dancing, missing trying to get her to dance, missing her trying to get on the screen (which she did a couple of times), missing her waving her signs she always made, missing her booing the other team at the top of her lungs. Whereas before I could go to games without her and enjoy myself, now I know what is missing. This is how my life is right now. Just going through the motions. I can’t even fake it. Faking it takes too much energy. It’s too exhausting. And frankly, I don’t want to fake it. I know it may make others feel uncomfortable or awkward but I just can’t care about that. I don’t take pleasure in things I used to find enjoyable. Everything is dull, muted. Things that used to make me smile, just don’t. The pleasure I felt at the golf tournament seems so removed from how I feel overall that it’s hard to believe it even happened. This isn’t living. This is just existing.

Most parents I have communicated with that are further along this journey than we are have said they did start living again. It took a long time, years, but they began experiencing joy along with the sadness. I just can’t imagine that that day will ever come. I don’t know that I want it to come. How can I be joyful in a world where I am missing the most important part of me? But how can I survive with this incredible sadness? Which never will go away. That is the consistent theme among bereaved parents. The sadness never goes away. You just learn to live with it.

How does one survive a lifetime in such despair? I’ve read a lot of books on grief. Some have been helpful. They have been helpful by assuring me we are not alone in this and our feelings are normal. And in many of them you can see the long term and know that overall most bereaved parents end up doing ok. Many of the books I have found are Christian based, which I don’t relate to. Jews have different beliefs on the afterlife and in all honesty I have no idea what I believe anymore. It just devastates me to think that a sweet soul like Ariella and all the other innocent children who have died only get a short amount of time and that’s it. I do like to believe that there is more for them, but do I really believe it? I don’t know.

What I do know is that every experience now is tainted because Ariella is not a part of it. It just won’t be as good as it could have been. We know what’s missing. We will always think that Ariella should be there. How do we live a lifetime like that?

Exercise and Routine

It never ceases to amaze me how long it takes to get into shape, and how quickly we fall out of shape. I used to exercise daily either by running or going to the gym. I used to love running and was actually pretty fast. I hadn’t exercised since Ariella was in the PICU. Even though I was home some nights and still working part time I was too exhausted to drag myself out of bed to get to the gym before work. You see, nights in the hospital were not conducive to sleep. Nights were fraught with beeps and alarms, vital signs and transfusions. Some nights the lights had to be kept on and doctors were in and out throughout. So even though I did actually get fairly good sleep at home it was not enough to make up for the lack of sleep when in the hospital. After Ariella died I wasn’t motivated at all to do anything, much less exercise. I honestly didn’t care about taking care of myself. What was the point? Nothing mattered.

I finally decided that it was time to do something. Even though I don’t much care right now about my health I realized down the road I just might and would regret not taking care of myself earlier on. So a couple weeks ago I forced myself to go to the gym. Not necessarily on a regular basis but to try to get back into a routine. The gym is actually one of my safe places. I don’t know many people there and those I do know, know my situation and will ask how I’m doing but stop there unless I pursue it further. I’ve been doing some classes at the gym and it’s actually quite therapeutic. It’s an hour or so of distraction from reality. And it also helps to kill time. By the time I roll out of bed and get myself together, take our dog for a long walk and then go to the gym, I’ve managed to get through half a day. I’ve been running twice. I am nowhere near where I was when I was running on a regular basis. I think part of that is because I hadn’t exercised in a while, but I’ve also noticed that since Ariella died my heart rate and respiratory rate are higher. And sometimes I find it hard to breathe. Stress and grief impact your physical condition and that combined with an increased heart rate from exercise makes it quite difficult. But again it’s therapeutic. So I will keep trying.

Though it helps to have the structure and routine and to get out of the house for a bit so I’m not lying on the couch all day staring at the walls, it also saps my energy and at times makes me panicky. There comes a point anytime I’m out that all of a sudden, I’ve had enough. I need to be home. I’m careful about what I agree to do because I need to make sure I have an escape if I need one. I’m worried about going back to work because of this. On the one hand it will be good to be able to fill my days but on the other hand I’m terrified that I will breakdown and not be effective at my job. I have a very hard time concentrating on anything and I can only hope that work helps channel my attention into the job so I’m not so distracted by life.

Sleep

Just a note, after I finished writing I realized it may be too graphic for some to read. I didn’t go into much depth but I talk about images of Ariella in the ICU. If that’s too much for you I advise you to skip to the last paragraph.

Sleep. Sleep continues to be elusive. Once I fell asleep last night I mostly stayed asleep but it took a very long time for me to fall asleep and I was up early. I have a reel of images running through my head and I can’t turn them off. These images mostly attack at night, though I do get flashbacks of them throughout the day. All images of Ariella in the PICU. Shattering images of her scared eyes when they were prepping to intubate her. Crushing images of her with her sad eyes and miming that she wanted to drink. Devastating images of her writing on her white board “What if I die?” and “I want to die. This is horrible. I might as well be dead.” Asking “am I getting worse?” Heartbreaking images of Ariella on her side when they were cleaning her, in obvious discomfort and a tear dropping from her eye. Distressing images of Ariella practically lifeless in bed, barely opening an eye even when being poked and prodded and moved around. These images do not leave me. I feel such anguish that this is how she spent the last two months of her life, mostly awake and aware. She wasn’t in pain but she was extremely uncomfortable and miserable.

Also very sad to remember are the few positive moments we had in the ICU because at the time, they were positive. Ariella being so excited for a taste of popsicle and Rita’s that she wanted me to tell everyone about it. Ariella being so excited for her tracheostomy surgery because it would mean the tube would be out of her mouth and she would be able to drink and talk. That was another milestone she wanted me to share with everyone because she was so happy about it. When Ariella woke up after her surgery she gave me a big smile when she realized the tube was out. We all thought that was going to be the turning point to get her out of the ICU. We had talked about what Ariella should get following her hospital stay as she deserved something big. And she said, well wrote, “how about new shoes?” All the hell she went through and was going through and she asked for shoes. Broke my heart. The last thing she had looked forward to was finally getting water. She was able to get just 5mL at a time about 3 times a day to start but boy was she happy to get just that. That’s how horrific it all was, that drops of water and tastes of a popsicle could bring that much joy. She had everything all planned out once she got out of the ICU. A big glass of water in the purple cup she won playing bingo, milk, Rita’s, and a shower. And then a big steak dinner when she finally got out of the hospital. None of those dreams were realized. She was on the schedule to have a swallow study completed but it never happened because she took a turn for the worse. After that she never fully recovered. The only comfort I take from this is that she was sedated near the end so no longer uncomfortable and scared.

To contradict myself now, I am glad Ariella was sedated for her sake but I regret not having the death talk with her. When she asked earlier in her stay “what if I die?” everyone thought she would recover and come off the vent, her lungs just needed more time. We did not promise her she wouldn’t die but we did say the doctors were doing everything they could to prevent that. When it became apparent that there was a good chance Ariella wasn’t coming home with us she was mostly sleeping so we never got to talk to her about how she was feeling about dying. By then was she scared to die? Or was she ready to die? What did she think would happen once she died? Where did she think she would go? What, if anything was she worried about? We have talked about death before and what happens after someone dies and Ariella believed in Heaven so I just hope with all my being that by then she was no longer scared to die and was ready to go. Because it kills me to think she might have been scared about dying near the end but didn’t tell us.

I started this post about sleep. This lack of sleep along with the grief is leaving me in what I would call a fog. Concentrating on anything for longer than a few minutes is impossible. I get distracted so easily but usually not by anything, I just end up staring into space. I am extremely forgetful and am having trouble just getting through routine tasks from start to finish. I find myself frequently losing my train of thought when in conversation. I wasn’t going to write today but I know if I don’t have something to do I will fall asleep and I am worried that a nap will make it even harder for me to sleep tonight. But maybe I should take sleep when I can.