Tag: child loss

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No Judgement Zone

I got two types of comments about my blog post that I shared yesterday. The first were the comments from people listening and actually hearing what I had to say. No judgment, no trying to make it better, despite the rawness and the darkness of the words I wrote. Expressions of love and caring and wanting to hear what I have to say. And then there were the comments telling me I shouldn’t feel that way. That I shouldn’t wish myself dead. That people love me and that Ariella wouldn’t want that. As well intentioned as I know these comments are, it is those comments that prevent other grieving parents from speaking up, from sharing their feelings, from putting themselves out there when trying to seek support. My feelings are valid. Talk to a group of grieving parents and I guarantee the majority have had thoughts of suicide, of dying, of welcoming death. It is okay for us to feel these things and telling us not to does not make those feelings go away. It just makes us feel like our feelings don’t matter. That we just need to suck it up and find a way to be happy even though our worlds have been shattered. I have spoken to bereaved parents further along this nightmare and I think maybe one day I will wake up and not want to die every second of the day but now is not that time. I know hearing those words makes people uncomfortable and sad. But they are not just words. They are my essence right now. I feel the pain deep into my soul and that pain makes it very hard to want to live. I know I have people here who love me and support me. It’s not about that. It’s about the crushing pain I live with every second of every day and wanting some kind of relief. I’ll be honest, there are times I am hesitant about sharing my true thoughts because it is scary and dark and something most people cannot fathom. But I got an email this morning from another bereaved mom thanking me for my post. She said it was real and expressed thoughts that she is uncomfortable sharing. And this is why I will continue to write and publicly share, no matter how dark and grim my thoughts are. Because bereaved parents need to know they are not alone. They need to know others have the same thoughts and have survived them. They need to know there is someone they can talk to who truly gets it. I think I can speak for most bereaved parents when I say that we know people just want to help. They want us to be okay and most are well-meaning. We know that people don’t know what to say. Just say you’re here for us. Don’t negate our feelings. Don’t tell us not to feel a certain way. Just listen.

I debated writing this because I know all the comments I got were out of love. And I’m not angry or upset with anyone. But the comments were a little upsetting and I want to continue to be able to share without judgement. I promised from day one that I would write my truth and I want to continue to do so, for me and for others going through this. So just when encountering a bereaved parent, or really anyone grieving, just listen. Don’t offer advice or platitudes. Validate their feelings and just be there. Know they may be having dark thoughts and that nothing you say or do will change that. But saying “I’m here” and letting them speak their truth may be just what they need in that moment.

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Living a Lie

I want to die. I want to die. Please G-d, just let me die. Please take me. Please, please take me. Ariella, please take me to you. I want to be with you. I need to be with you. I can’t do this. I can’t be here without you. I beg you. I am on my knees begging to be with you. I need you. I need to be with you. I can’t do this. I don’t want to do this anymore. How can I give myself a heart attack? Can I will myself to die? How long will it take to die of dehydration? Starvation? How can I cause a natural death to myself? Are there painless ways to die? That song, those words, that book, that story line on a TV show. A picture, a place. So so many ways that I connect to you. That bring me back, that remind me (as if I could forget), that shake me to my core. When will this end? How can I make this pain go away? This is never ending and unendurable. On the outside I look okay but inside I’m shattered. These thoughts play in a constant repetitive loop, especially at night when I have nothing else to occupy my mind. I toss and turn, pull my hair, hold a pillow over my head, in vain attempts to drown out this noise, but it’s futile. I just want it to be over.

A couple weeks ago I was asked the question again. Do I have kids? I hadn’t been asked that question since Ariella died and then I get the question twice in two weeks. Maybe it was so I could redeem myself, answer honestly, not deny Ariella. And I did redeem myself. As much as I knew it would lead to an uncomfortable encounter, I told this person, an instructor at my gym, that my only child, my daughter, died last year. She reacted as anyone one would, with condolences and apologies. And then she said that she didn’t know why she asked and I could tell she felt bad. I almost apologized to her. For saying the truth. For being a downer. But I did nothing wrong. I told my story. This is me. This is who I am now. My identity. It’s not up to me to make it okay for others. Because it’s not okay. It will never be okay. If it makes others uncomfortable, so be it. If you don’t want to know my story, don’t ask. If my story might make you uncomfortable, or sad, don’t ask. Being a mom was a large part of my identity. But it wasn’t my only identity. I was a wife, a friend, a daughter, an occupational therapist. Being a mom didn’t consume me. But being a bereaved mom is my only identity. Because everything I do now, everything I am, is through the lens of grief. I am still the other things but my life story took a sharp detour. It completely careened off the path I imagined and now every thought and every action is accompanied by loss and sadness and heartache. I never imagined this would be my life. Life was great and then out of the blue everything fell apart. And now my life from before seems like it wasn’t real.

I am living a lie. I lie daily. Multiple times a day. Anytime someone asks “how are you?” or “how’s it going?” Maybe I answer a little more honestly if it’s someone I know, but usually not. It’s exhausting. It is so tiring to try to function in society. To be able to be among people and pretend like everything is okay. To smile (though that’s easier to hide now with masks) and make inane small talk and just get through the simplest of transactions. It is still so unimaginable to me that I do things like go to the store and act “normal” when my world has fallen apart. I am living it and I still find it unimaginable. How is this my life?

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Dear Fellow Bereaved Parents,

I started this blog as a way to just get out my feelings, but also to let others know how I really am. As you all will know, especially in the beginning, well-meaning friends and family frequently ask “how are you?” and most of us probably respond with something like “okay”, or “hanging in there”, “getting by”, “surviving”, or any other word that does not come close to describing how we are actually doing. But the last thing I want to do is go into how awful I feel, how much I want to die, how angry and sad and heartbroken and shattered and I am. It is not my job to make others comfortable in those situations and yet I do not want to be part of the awkward conversations the true answers will lead to. Later on in the grief, when it is still heavy in our minds but not in the minds of everyone else, when it is just polite conversation, the last thing the person asking “how are you?” is expecting to hear is the truth. I feel like such a fraud when anyone asks me how I am, whether it be stranger, acquaintance, good friend, or family member. Because I always say “okay.” And I never am actually okay. Sure a select few know when things are especially bad but in general social interaction, no one has any inkling as to what is really brewing beneath the surface.

The point of this is to say to you, my fellow bereaved parents, that I see you. I recognize that pain in your eyes even when you say you are holding on. I recognize the anguish underneath your calm exterior. I see you desperately trying to survive as you go about your daily lives. I see your anger and your guilt, your hurt and confusion. When the rest of the world thinks you are just fine now that you are back at work, or getting out of bed each day, or doing the things you used to, I see how hard and exhausting it is to maintain those routines. I see you scraping by, going through the motions, because you have no other choice. I know that when you say “I’m okay” you are screaming inside “I am not okay. How can I be okay? My child died.” The truth is, only another bereaved parent can understand this duality we live. The selves we put out there for everyone else, and our true selves. And only a bereaved parent can understand the fatigue and guilt this double life causes. I was asked the question the other day, the do I have kids question. I was at the gym with an instructor I didn’t know, right before a class started. I panicked. I did not want to say no and deny Ariella, but I did not want to say yes and then get into a discussion where I may have to tell the instructor that my daughter died. So because I wanted to keep my facade and seem to be fine, I answered “no”. And the pain and guilt I felt immediately after the word “no” came out of my mouth nearly suffocated me. This is what life is like for us bereaved parents now. No easy answers, planning ahead to formulate responses to common questions, and feeling shame. I see you wrestling with every day decisions, struggling to make normal conversation, and pushing through each day feeling so alone.

As I mentioned, I started this blog mostly for me, and so others could know what I am really feeling, how I am really doing. But I also wanted you, my fellow bereaved parents, to know that your feelings, whatever they are, are okay. That how you are grieving, is okay. Your grief, is yours alone. You grieve how you need to. And while everyone’s grief path is different, you are not alone in your thoughts and feelings. I hope that some of you may recognize yourself in these posts and realize that you do have a community that wants to hear your honest answer to “how are you?”.

Several people have suggested that I publish this blog. And maybe one day I will do that. But the other thing I am hoping to eventually do with this blog is to give newly bereaved parents some hope. Hope that one day down the road they will find joy, be happy at times, laugh without guilt, find peace. But I am not at a point where I can imagine feeling that way and I realize that there is not much hope in this blog at this time. I read other blogs and books to get my inspiration and maybe years from now this blog will be a place where newly bereaved parents can see the journey I took from begging daily to die to feeling some kind of peace. In the meantime I hope it at least lets you know you are not alone in your feelings. I hope it lets you feel seen.

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So Very Tired

I don’t post much on Facebook, other than childhood cancer awareness posts. But the other day, I just felt so tired and fed up that I wrote a very long rant, which I accidentally deleted before finishing and posting. I didn’t have it in me to type it all again, which probably was a good thing. Because I am not looking to argue. I prefer to express my views and thoughts and feelings here, where people have to make an effort to read them. Sure it’s just clicking a link if I share it to Facebook, but that in and of itself is a choice, rather than maybe catching a glimpse of what I wrote when scrolling by. Some people use Facebook to share their lives and join groups and communities. Others may use it to spread information and share facts. But it seems so many use the platform to spread lies, rumors, hate, and racism. What I see there on a daily basis disgusts me. My friends list consists of people I actually know in real life, cancer families, and bereaved parents. Most of what I am referring to is not posted by people on my friends list. It’s comments on articles or other posts, or posts and comments in groups I’m in. But I have blocked friends for things they have posted and will continue to do so. Not for things that are a simple difference of opinion, but things that are clearly hateful and racist. It’s not about politics, it’s about human rights and basic decency. Anyway, I did not intend to write about Facebook, so let’s get to the point of my post.

I mentioned that I started my Facebook post because I was tired and fed up. I know many of us are, for various reasons. What prompted me to start that post was just one more comment about how mandating masks violates rights. Blah, blah, blah, whine, whine, whine, my rights, my rights, my rights. Requiring a mask in a store is no different than requiring shirts and shoes. You don’t like it, don’t go. Sure there may be some medical reasons why one cannot tolerate a mask, but I see so many, so many people say they can’t wear one and I highly doubt it’s that widespread. They are uncomfortable and hot but that doesn’t mean you can’t wear it for the short amount of time you are in a store or ordering food or whatever. If you truly cannot, this doesn’t apply. I certainly am not going to be the mask police because I don’t know someone’s reason for not wearing one, but I will certainly give you the side eye if you are say, not wearing a mask while walking through the gym even though it is the rules of the gym (you do not have to wear the mask once you begin exercising). If you can walk on a treadmill, you can wear the mask to get there. You know who I never seem to see complain about wearing masks? Children. I have seen children out at the stores, all wearing masks and wearing them correctly. I’m sure they pull them up or down at times, but mostly they seem to be keeping them on. Yet adults are throwing tantrums over this. Every time I put a mask on, every time, I am brought back to the oncology clinic when Ariella would have her port accessed. I had to mask up for that. This is what masks remind me of. Ariella getting jabbed with a needle so her toxic chemotherapy could be delivered. I see the needle and the room. I smell the smells. Wearing a mask physically brings me back there. Seeing masks everywhere I go brings me back to the ICU, when anyone coming into Ariella’s room had to wear a mask. It takes me back to that room, Ariella lying in the bed, connected to machines and the ventilator. I hate masks. They are a trigger for me and completely unavoidable. But I wear them. I wear them for the community. Many say those who are more susceptible should just stay home. But say they do? What about the people that shop for them or care for them? Those people do need to go out in the world and if they are exposed, they bring it to the people they are caring for. Masks work. But I know that I am not going to change anyone’s mind who disagrees, and that is not the point of this, so I will not say anything further, other than this. Even though I think anyone who can wear a mask, should, I do not agree with “mask shaming.”. As I mentioned, there are valid reasons why someone may not be wearing a mask and unless you know their reason, it’s not your place to enforce the rule. Just stay away from that person if they make you uncomfortable. Now if they are being an asshole about it, refusing to wear one just because “I can do what I want, I don’t have to wear a mask”, then handle that as you like.

I am tired that people complain so much about minor inconveniences when yet another family that we know had to say goodbye to their child because of cancer. America is a country full of selfish and entitled people who do not realize how good they have it. Does the pandemic suck? Yes! But most hate it because of the quarantine. What about the people that have died, or have lost loved ones? People like to quote statistics. They like to say it’s such a small number that die. But what happens when it’s you, or your child or loved one? Do you want to be treated as a statistic, or a person? People take comfort in statistics because they can think chances are low that it will happen to them. Well you know what is rare? Sarcoma. The chance is low that you will get sarcoma. Well that is little comfort to me. And if there was a way I could help prevent others from getting sarcoma, or any cancer for that matter, I would do it. There is a way to help prevent Covid, and that is a mask. Shit, back at the mask again. That wasn’t my intention here. It’s just such a minor thing when there are people out there with real issues. The constant complaining is wearing on me.

I am tired of the racist posts and memes I have seen on Facebook. If you find yourself unfriended or blocked, that is probably why.

I’m fed up with people who apparently seem to think that now that a year has passed, we are okay and there is no need to reach out anymore. It hurts. It hurts a lot when people disappear. I know people have their own lives and my loss is not first and foremost on their minds, but still. My circle has gotten significantly smaller. I do take comfort in those that are still there (hopefully you know who you are) because I know it hasn’t been easy. I still do not always respond to messages, I often do not want to get together, and I almost never will initiate any kind of plans, or even conversation. But I always appreciate the effort.

I’m tired of kids dying from cancer. I’m tired of the lack of attention and funding pediatric cancer gets. Imagine if there was the same attention and outrage for childhood cancer as there is for Covid-19. The difference is cancer isn’t contagious and statistics say childhood cancer is rare, so again, people think it won’t happen to them. But really, who the fuck cares if it’s rare?! Isn’t one child dying one child too many? Our children are worth more than that.

I’m tired of living. I’m tired of my empty life and quiet house. I’m tired of trying to figure out how to fill my days, especially now that I’m not working for the summer. I hated, HATED doing my job virtually, and I was so happy for the last day of school. But now I’m struggling with trying to find distraction, finding something to do to keep me from screaming in a rage. Trying to figure out how to just “be” is exhausting. Grieving is exhausting. I’m so tired.

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The Math of Grief

It's been minutes since you died. 
It's been a lifetime.
The past year was seconds.
The past year was an eternity.

Twelve and a half years ago you were added to our family.
Our family was whole, was one.
Eleven and a half years later you were taken away.
But we are not equal to what we were before you were born. 
The only change in the equation is you.
You weren't here, and then you were, and then you weren't.
And now we are less than we were before you came into our lives. 
Because now we know what we are missing. 

1+1=2
2+1=a family; everything
3-1=0; without you, nothing else matters
No matter what or who we add to our family, it will never be complete again.
We will forever now be just a compilation of parts, that do not form a whole.
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Grief Doesn’t Go Away

Grief doesn’t go away. It doesn’t end. It changes, shifts shape, but it is always my companion. This is true even with the grief I have for my father. He died over 4 years ago. The grief for him is not as heavy, not as all encompassing, but it is certainly still there. And though my dad died younger than he should have, I knew one day I would have to live without him. But knowing that doesn’t change the ache I feel when I’m missing him. It’s just not as oppressive as it used to be.

With Ariella, it’s different. You never expect to outlive your child. My grief for her is still oppressive, and yet this grief has also shifted. The feeling that I cannot possibly survive this has lessened, because I have survived for a year. It’s been devastating and suffocating, but I’m still here. So I know I’ll survive, which somehow makes it worse. Because I don’t want to survive this life. I don’t want to live without her. I still cry at some point every day but there are now small moments in time when she is not my first thought. She is still the first thing I think about when waking up and the last thing I think about before sleep. And the majority of the day is spent missing and wondering and just plain hurting. But it is somehow different. Instead of the constant, nonstop sharp pangs of grief, it is a constant ache accompanied by large waves that threaten to knock me over and drown me. I have gotten use to this pain, to this heaviness, to this always knowing that I will never be complete again. I have not gotten used to these waves that come at me at unexpected moments, set off by the smallest trigger or memory. Though the pain is always there, those sharper waves catch me off guard. They are hard to recover from.

Grief changes a person. Especially with an out of order death. I am not the person I used to be. I was always more serious than silly, but was definitely more carefree. I used to sing at the top of my lungs in the car, dance around the house, play games, joke around. I don’t do those things anymore. I’m not lighthearted anymore. I most definitely am not a fun person anymore. It’s not guilt. I know Ariella would want me to have fun. She would want me to live, to enjoy life, to have experiences. But I just don’t want to. It’s not in me anymore. Fun. I don’t know what that is. I have times that are pleasant. But nothing that I would call fun. There is always something missing. What a complete change from someone who laughed a lot to someone who barely even smiles. Real smiles. Smiles that reach my eyes. Smiles that mean I am actually happy in the moment. Even the moments where I may seem happy, when I laugh, are not real. I don’t know how to explain it, but there is always a part of me that is not engaged. That is held back. The part of me that indicates how I truly feel, how I really am doing, not how I say I am doing. I always had anxiety. But it has gotten so much worse. For me this quarantine has been a blessing because it means I don’t often have to go out, I don’t often have to make small talk, I don’t often have to worry about being sucker punched by a song, a memory, a thought, or anything else. The anxiety, along with the grief, is ever present. Grief is fickle. Some days I don’t care about anything, meaning that nothing really matters. The things people complain about, the everyday worries and activities, etc. None of it matters and I just can’t be bothered to care about the small stuff. And as they say, it’s all small stuff. Other days the smallest annoyance or aggravation can set me off. Spilling something, a stain on my shirt, a delayed delivery of something I ordered. All things that don’t matter when the most important thing is gone, and yet somehow they sometimes matter more. Because why can’t something go right?

I have been at this post for several days now. I just can’t seem to finish it. I can’t seem to find the words. I want to write. I NEED to write. But I think I’ve lost why I started this blog in the first place. There were several reasons but first and foremost it was a way for me to get out my thoughts and feelings, for me. I didn’t want to talk to anyone (mostly still don’t) so my words had nowhere to go but on paper (well on the computer). Even though I wasn’t talking much about my grief I had/have all these feelings that need to get out lest they bubble up inside me and cause an explosion. Secondly, I wanted to have a place where one day I could hopefully look back and see how far I’ve come. Clearly I’m not there yet, I am still in a very dark place but maybe one day, years down the road, this blog can reflect some moments of happiness amidst the sadness and pain. Thirdly, I want this to be a place for other bereaved parents to come to, to realize they are not alone in their grief and in their thoughts and feelings. Maybe one day it will be a source of hope for those newly bereaved parents but right now it’s a way to connect with others that relate. Finally, I wanted to try to explain, to make others understand, what I am going through. I realize that is futile. Words are not sufficient to make others understand. There are no adjectives strong enough to describe the despair and pain and heartache and sadness and heaviness and sorrow and guilt and anger and grief that a bereaved parent experiences. There is no understanding from those who haven’t also lost a child. And I certainly do not want others to have this level of understanding, because that means they too are mourning a dead child. I would not wish this on anyone. But this lack of understanding, though no one’s fault and certainly not for lack of trying to understand (from some), makes being a bereaved parent a very lonely place to be.

I am not sure what I am trying to say here, except that I am forever completely and irreparably changed. Those who are here for me, that want to be here for me, need to understand that. I may go out, join the rest of the world as we slowly come out of quarantine. In fact I have started, with going to outside gym classes. I may even smile, and laugh when I find something funny. But I will not let loose. I will not be carefree. The sadness and pain will be lurking, even if not obviously visible. “Normal” situations feel so very wrong to me. Guilt isn’t the word but it just does not feel right to go about living. To go out with friends. To have dinners with family. It’s like living in a parallel universe or an alternate reality. Like an out of body experience. I am watching myself in those moments, wondering how it can be real. How can this be my life? How can one go on and have normal, everyday moments when their life has been completely destroyed? It seems impossible. I think it is impossible. Because even though I live those moments, I am never fully participating. As painful as every moment is, every day, multiple times a day, I am in utter disbelief that I had a child, my child had cancer, my child died. I still can’t fathom that my perfect world was shattered. That the two things I want most in the world, Ariella and to be a mom, are gone. That I can’t have what I want most no matter how much I try to wish it into existence.

The other day, David and I were driving home during sunset. The colors in the sky were exquisite and the light was just stunning. One of those sunsets where Ariella would have asked us to stop so she could take a picture. I can acknowledge the beauty in this life. But there is so much pain in seeing the beauty because I’m missing the person I most want to share it with. How can so much beauty exist alongside so much pain?

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A Letter to the one who made me a Mom

Dear Ariella,

Today is Mother’s Day. As much as I would like to ignore it, that doesn’t seem possible, or right. After all, you made a mom. You were the one who gave me homemade cards and picked out special gifts. You were the one, the only one, to call me Mama, Mommy, Mom, and when you were feeling snarky, Mother. Because of you I am a mom and because of you I always will be.

The thing is, I don’t feel much like a mom. I will always be your mom but it is very surreal to be a childless mother. I don’t get to do all the mom things anymore. I’m caught between worlds and have seemingly lost a huge part of my identity. I don’t know where I belong anymore. My grief is not just about missing you. It’s also about missing being a mom, to a living child. Missing the daily activities and routines of being a parent. Missing that unconditional love and having someone to nurture and take care of.

This is my second Mother’s Day without you. But last year was such a blur and didn’t really register. The grief was so new, and so raw and the day didn’t matter. This year I want to tell you how grateful I am that I got to be your mom, even with all the pain that came later. I am so lucky to have you as my daughter and I would do it all over again, even knowing the devastating outcome.

You were the one who gave me my most important job and most meaningful role. So you can imagine why I am having such a hard time finding my way. I don’t know who I am anymore. I have changed. Become unrecognizable, even to myself.

But for you I will try to find myself somehow. I know that’s what you would want for me. Nothing can replace you and nothing will. I will always be missing you. Thank you for choosing me to be your mom. For that I have been blessed.

I love you always and forever, to the moon and back, times infinity.

Love,

Mommy

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572,040 Minutes

525,600 Minutes. How do you measure a year in the life? I’m sure many are familiar with this song from Rent. How do you measure a year? 12 months, 365 days, 88,330 hours, 525,600 minutes. And actually, this year has been longer, by a day, by 24 hours, by 1,440 minutes. 527,040 minutes without my girl, my world, my reason for being. 527,040 minutes filled with pain, etched with sorry, heartache, and despair.

A lot can happen in a year. On the one hand, this year has dragged and dragged. Each day longer than the next, looking forward each day to bedtime so I can go to sleep once again and not have to think or feel. I look back at this year and cannot imagine doing this another 40 or more times. It has been excruciating, with so many triggers and landmines coming at me day in and day out. Constant reminders of what we had, what we lost, what we will never have. Lost milestones, missed experiences. There was so much more that she wanted to do. So much more that we wanted to do. And this year is just a tiny fraction of what we have to endure for the rest of our lives. On the other hand, I find it hard to believe that it has been a year already. Somehow, I survived. I made it. Mind you, I don’t view that as a positive. Survival is exactly how it sounds. Getting by, living, getting through each day, going through the motions. I don’t feel any sense of accomplishment or peace or comfort in having made it through the first year. There is no joy, no contentment. No relief that I survived the first year. All I feel is dread, looming over me. Of what life continues to look like moving forward. Of how much more we will continue to miss out on. Of how much I miss Ariella and will continue to miss Ariella. When she died she left a hole that can never be filled, no matter how many years, days, or minutes. As time goes on we will face more milestones and more experiences that she should have had. At Ariella’s unveiling the rabbi mentioned how we made it through all the firsts. The first holidays, the first birthday, the first of everything after her death. Is that supposed to be some kind of relief? I don’t think it gets any easier moving forward. In fact, I think it is going to get harder.

So how do I measure this past year? In tears, in breakdowns, in heartache, in sleepless nights. In rainbows, in butterflies, in searching for signs. In deaths of children, in funerals, in celebrations of life. In bears, in fundraisers, in grief, in memories of a better life. Measured in loneliness, isolation, futility, and despair. In quarantine, in masks, in days working from home, in rolls of toilet paper. Measured in loss of some friends and family, but also in gains of new friends and supports. But mostly, in missing. In missing Ariella. In missing her beautiful smile and infectious laugh. In missing her eye rolls and bear hugs. In missing our game nights and movie nights, sleepovers and girl trips to New York. In missing her hand in mind, her voice, her pranks, her exuberance. In missing watching her dance, watching her grow, watching her become more independent. In missing helping her with her homework, doing crafts, cooking for her, driving her all over. Along with the missing, is wondering. Wondering what she would be doing right now. Wondering how she would handle the quarantine (not well, I imagine). Wondering what book she would read, what project she would start, what craft she would create. Wondering what her hair would look like now, how tall she would be, what she would be learning in school. That’s what this year has been. 572,040 minutes of sadness and missing and wondering.

I can’t forget love. As the song goes, “measure your life in love”. There has been so much love this year. The love David and I and all our family and friends have for Ariella. The love that has been expressed for Ariella. The love that has been shown to us, not just this year, but since 2017, when Ariella was diagnosed. The love that continues to surround us even though we don’t always show it in return. The love doesn’t make it better. It doesn’t make up for the missing and the wondering. But it does remind me that no matter how alone I feel, there is always someone there.

So here we go with the next 525,600 minutes.

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Yahrzeit

So here we are. Nearing the dreaded day. Just five days from Ariella’s Yahrzeit (the Hebrew date anniversary of following the death). Got the reminder email a couple days ago, like I need a reminder to remember the date that my life ended. Even if I wasn’t thinking about it, my body just feels it. I still cry daily, but these past couple of weeks have been brutal. I cry at everything and nothing. Riding to Coldplay on the Peloton yesterday morning and tears were streaming down my face for most of the ride. This morning on a ride This is Me from The Greatest Showman had me in tears. The lyrics for one, but also because Ariella loved that movie. I have no idea how many times she watched the movie but that music was our soundtrack to life for a while. Images again are flashing in my mind of Ariella in the ICU. It’s been almost a year and the pain isn’t any less and the memories and images are just as vivid. The pain will never lessen. It’s learning to live with the pain and the loss. And I still don’t want to. I don’t think I will ever be at peace or content. And living like this is miserable. I’m not so worried about coronavirus because I wouldn’t care if it took me. I don’t care about not leaving the house, not being able to go places because it’s easier to be at home. At home I’m not confronted with the happy lives and perfect intact families of everyone else. At home I can escape life.

I am not in a good place. Really I haven’t been in a good place since May 9, but I’m back to where I was in the days immediately following. I actually think I’m in an even darker place now. Life just feels so dark and bleak and empty and meaningless and the pandemic is triggering all sorts of memories, emotions, and PTSD. I’ve had people reaching out, wanting to talk and have virtual happy hours and I am not up for any of it. I don’t want to talk to anyone. I can’t make conversation and small talk feels so offensive to me right now. I don’t even want to communicate through text. I don’t care about any of it. I just want to be alone. The best part of this quarantine is not having to go out and make small talk with anyone. However, we had planned to have the Unveiling on May 3 but it doesn’t look like that’s going to happen. This really upsets me. I’m not sure why that upsets me so much. It will just be postponed. Maybe because it’s how we were going to honor her a year later. Maybe because it’s supposed to be done within the first year and I feel like I’m letting her down. I’m sure that sounds ridiculous to those who don’t get it, and believe me, I don’t want anyone to get it. But these ceremonies and traditions are the only things left that I get to do as a parent. So they are very important to me.

Plenty of people are grieving right now. Grieving losses of experiences and memories they were hoping to make. And I get it. But it’s temporary. No matter how long it lasts, in the grand scheme of things it’s just a blip. A period of time that people will recollect as scary and uncertain, but also with plenty of fond memories. And once it ends, everyone gets to go back to experiencing new things and making new memories. So please remember that. Missing prom, missing graduation, having to postpone a wedding, is not the end of the world. It’s sad and disappointing, but a few years from now it won’t matter. We couldn’t go to the funeral of a friend of Ariella’s who recently died because of the restrictions. In a time where a parent needs as much support surrounding her that they can get, they couldn’t have it. We have friends with a very sick child and what they hope for right now is that this ends soon so their daughter can have some more experiences before cancer takes her. When this ends, David and I are still grieving. The experiences Ariella missed and the ones we missed as a family are never going to happen. When life resumes for most, it won’t for us. There aren’t more experiences to be shared, more memories to be made. This is it. Our grief is permanent.

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Pandemic

I can’t not write about this. This pandemic provides a fascinating study in human behavior. David and I did our weekly shopping Saturday morning. We go to Trader Joe’s and are always there on the early side. But this day we wanted to be sure to be there right when they opened. And we were. Along with the rest of the community it seemed. But I was pleasantly surprised. The shopping itself felt frenetic, but mostly due to the sheer number of people in the store. The aisles are narrow and it was hard to get around. But most people were reasonable (other than the guy that was running through the store and slammed into David with his cart) and not hoarding (except for the lady with 10 packs of meat, all of the frozen vegetables, and multiple gallons of milk). David found a pack of toilet paper that we didn’t need, made a joke about selling it and put it back on the shelf. No one around us then fought for that last pack. Overall the mood in the store was pleasant. Making jokes for some levity, understanding we are all in the same boat (except that one lady who didn’t seem to give a shit), and just getting along. Though they had to have been exhausted and frazzled, the Trader Joe’s employees had big smiles and were friendly and helpful, as usual. We were able to get everything we needed that Trader Joe’s carries, except cabbage. We knew we would also have to go to Wegman’s to pick up some things Trader Joe’s doesn’t carry. I was pleasantly surprised there as well. Though there were people in the store it wasn’t nearly as frenzied as Trader Joe’s. Of course the store is bigger so everyone was more spread out. A lot of things were picked over but again, with the exception of a couple of people with cases and cases of water, most people seemed to be reasonable and rational. In the media we see the worst. We see the worst in people, we see the worst case scenario, we see the panic. We see so much of the bad that we often overlook the good. But the good is there and the good is how we are going to get through this.

In my previous post I said I wasn’t worried about the virus. I’m not. But I’m extremely unsettled, as I’m sure most of us are. All the talk of ventilators and ICUs and lungs and breathing brings me back to exactly one year ago, when that was our life. I was already thinking and thinking about that time and am having the same feelings, same anxiety, same emotions. More than just remembering, I am living it again. The only thing that has kept me sane was exercise. Going to the gym is not the right thing to do (and as I am writing this Governor Hogan just issued an order closing all gyms among other things) and I hurt my leg running a couple of weeks ago so I can’t run. I went for a walk but it just doesn’t have the same affect. Without exercise I feel even more restless, unsettled, anxious, and stressed. I am desperate and actually ordered a Peloton bike. Won’t be here until the 31st though. Without working and with no place to go, there are so many more hours in the day to fill. Much more time just to think, be alone with my thoughts. It’s not a good thing. As challenging as I know the next few (or more) weeks will be for parents, I would give anything, ANYTHING to be in that position. So please, please just stop complaining about being quarantined with your kids. You are not special, you are not the only ones in that situation, and complaining doesn’t get you anywhere. The individual complaints are just plain ridiculous. Because this affects EVERYONE. David and I were supposed to go to Boston in a couple of weeks. See some friends and support another foundation. We don’t have much to look forward to so when we do, it helps us get through the days. It’s disappointing, yes, but everyone across the country is dealing with disappointment. Instead of complaining, think about how you can help. How you can make things better. And be there for those who may find this even more crippling because of their personal life experiences.

I started this post talking about human behavior. And you see all types in times like this. Those who are helpful and those who cause harm. Those who worry about the greater good and those who are selfish and will do whatever the hell they want because this is a free country. But along with that I think mental health gets lost. Anxiety is serious and does lead to some of this behavior we are seeing. The feeling of having no control and trying to exert whatever control we can over a situation. I learned in February 2017 that no matter what we do, we do not have ultimate control. But for others, this may be the first time they really feel a sense of that loss of control. Some have the capability to take this in stride, go with the flow but others may not. So do what you can to help. To not make things worse. To be there for those who may not be doing so well.