Author: stein28

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Grief in the Second Year

There is a common misconception that the first year following a death is the worst. That once you get through those first milestones; birthdays, holidays, the anniversary of the death, that there is some sort of closure. That life returns to normal. That when you survive the first year, it gets easier. What they don’t tell you is that for many, the opposite is true. That the shock and numbness wears off and you are left to fend on your own. That the majority of your support system will go back to living their normal lives while you are left floundering. There are a special few who stick around, who are really there, but even among those very special people, your loss is no longer on the forefront of their minds. They have their own lives with their own routines and while they don’t forget about you and your loss, they have their own priorities.

By the second year I imagine most have started adjusting to their “new normal” (oh how I hate that phrase). I know David and I have. We’ve long since returned to work, I’ve returned to exercise, we see people, and go about our daily routines. All ordinary behavior and yet it continues to feel surreal. How? How can we possibly live our lives, act like normal people, when our daughter is dead? A phrase commonly heard when you hear about the death of a child is “I would never be able to survive the death of my child”, and yet we do. Our hearts, though broken, continue to beat and our lungs continue to draw in air. We really don’t have much choice in the matter and so we live our lives, as empty as they may feel. On the outside, we look okay. We look like we are functioning. The pain is no longer obvious to those who don’t know us. But though we may smile and laugh and even have fun, effectively hiding the pain, the pain is always there, simmering just under the surface, ready to explode at any moment. Sometimes reaching the boiling point can be predicted, and other times it’s completely unexpected. Sometimes the trigger is obvious, and sometimes, for no apparent reason, the grief and pain become so overwhelming that it literally makes me crumple, brings me to my knees. The point is, the pain is always there.

Five months into this second year and the days are harder and longer with a road in front of me filled with dread and anxiety, pain and heartache. Being in the middle of a pandemic doesn’t help matters; there are fewer distractions and means of escape. It’s like living in the movie Groundhog Day, where every day is a repeat of the day before, with no end in sight. I still cry everyday. Sometimes just a few tears and sometimes heaving sobs that take over my whole body. I still have visions of driving my car off a bridge or into a tree. I still wake up each morning with anger that I woke up at all and with the dread of the agonizing minutes and hours ahead until I can escape in sleep again. Except that sleep isn’t always an escape these days. Sometimes my dreams torture me just as much as the daylight hours, leaving me feeling unsettled for the rest of the day. During this second year I have fully come to realize what life is going to be like now. During the early days, even though the unfathomable did happen, there was no imagining how I would get through each day moving forward. Yet somehow I have made it to this point and now there is no more imagining, I know truly how terrible and painful it feels to be in this life without Ariella. And that’s what I have lying ahead of me for decades. Reality sinks in and numbness wears off during the second year. Anyone who thinks grieving should just end after a year hasn’t experienced significant loss.

I saw one of my oldest friends the other day. We have been friends 32 years. Over the years we have been in and out of touch as happens, but our daughters met a couple of times and we’ve been there for each other when it matters. We got to talking about friends and friendships and how they change. How what we need in friends changes as we get older, but also following traumatic events. And at that moment I realized that I need to stop mourning the loss of the friends and family that left me not only after Ariella died, but after Ariella was diagnosed. The friends and family that are here are here because they want to be. I have exactly the friendships and connections I need and I am grateful for them, because not everyone has that following a tragedy. I have friends that frequently reach out even though I often don’t reply. Friends that are always inviting us out and don’t get offended if we turn them down. Friends that anticipate our needs, like our friends that invited us to dinner on Halloween to make sure we aren’t going to be stuck at home having to face trick-or-treaters (if that even happens this year), knowing Halloween was a favorite of Ariella’s. Friends and family that don’t ignore my grief, that aren’t afraid to talk about Ariella, but in fact encourage it. Friends and family that understand that grief is selfish and that I am most likely not going to reach out and instead the ball is almost always in their court. Friends and family that don’t try to make it better, that don’t try to fix me, that don’t try to make me see the silver lining (there is no silver lining), that don’t think I am stuck in grief. This second year of grief has continued to be hell but being able to let go of unworthy relationships has been somewhat freeing. I’m hurting enough, I need to let go of people and situations that cause more pain.

In the second year you realize this is it. This is life from this point forward. The same thing day after day after day. Year after year. Not much to live for. Not much meaning. The second year is most definitely harder than the first.

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13th Birthday

Dear Ariella,

Today is your 13th birthday. A milestone birthday. Finally a teenager (though you had the attitude of a teen by the time you were 8) and you’re not alive to see it. What we should be doing this weekend: Not a big party, since you would have just had your bat mitzvah, but maybe a sleepover with a couple of your friends. Or a mother-daughter trip to New York to take in one of the shows you’ve been wanting to see. Or a road trip adventure to someplace you’ve never been. Definitely dinner at one of your favorite restaurants. Since this is fantasyland I am imagining what we would have done had there not been a pandemic this year. Though it shatters me to think about it, I can’t not picture what this day would look like if you were alive.

Your birthdays were always extra special because we celebrated with Pop-Pop, whose birthday is the day after yours. Did I ever tell you that when I was in labor Pop-Pop actually said to hold on until the next day so you would be born on his birthday? He was joking of course (I think). This after you were already 10 days late. You always did do things on your own time, never in a rush. In fact I think you are the slowest person I have ever known. Anyway, your last birthday with Pop-Pop was in 2015, though of course we didn’t know that then. Just 4 months later he died and we were definitely missing him on your 9th birthday.

This picture above was your 9th birthday, your last normal, birthday. We missed Pop-Pop but unbelievably it was going to get worse. Our world was about to implode. On your last normal birthday you got a phone call from Mickey Mouse (or maybe it was Goofy) telling you that you would be going on a Disney Cruise and trip to Disney in April. That trip never happened. Little did we know that your hurt leg was more than just a dance injury. That it was cancer cells, mutating and growing, about to change our lives forever. Little did we know how much our lives would change. Never could we have imagined that you would live through only 2 more birthdays and that you would be fighting for your life for both of them.

I am glad you got the opportunity to experience what it feels like to fly on your 11th, your last birthday. The freedom, the weightlessness, a few minutes away from the cancer and illness and fear. There is no feeling quite like it. I wish that I could fly, leave this earth, and join you where there is no more sadness, pain, fear, and illness.

What do I want you to know on this milestone day, this 2nd birthday without you? I’m struggling. I’m sad and empty. Many would say that you would want me to be happy, that I should be happy for you. But I disagree. Not with you wanting me to be happy. Of course you do. You didn’t want to see anyone hurting, you always wanted to make them feel better. But you always understood that it was okay to be sad and scared and worried and it was okay to express those feelings. In fact you often expressed those feelings, and quite loudly I might add. You were never taught to hide them and put on a happy face for the sake of others and you wouldn’t want me to do that either. You would want me to be happy, but in my own time, and for me, not for anyone else.

Not much has changed since your last birthday, other than it’s just harder. It’s harder to get through the days. I miss you more and more each day. I miss your laugh, your smile, your hand in mine. I miss the excitement you had for your birthdays and the anticipation for Halloween. Random memories pop into my mind with no rhyme or reason and I love them, but they also feel like a sucker punch to the gut. I wish I had taken greater note of the memories we had but how could I have known? Not the big memories, but the smaller moments. The mundane ones that made up our lives. The funny things you said or did. The little things that you don’t think you have to remember because they will always be there and moments like that will continue to happen. I thought we would have had a lifetime of moments, a lifetime to make memories, not just 11 years and 7 months. Each day, each milestone, each birthday, each year, takes me farther from those memories. But yet they also bring me closer to joining you. Time is both a gift and a curse but mostly a curse. Because there is so much time left without you.

Things have been hitting me extra hard lately. I had to leave an exercise class early the other day because of a song. I have gotten teary in many a class but this time there was no way I could stay. I have never left a room so quickly, but to be fair, “Tears in Heaven” is a sad song on a good day. I had asked you for a sign earlier that day and I wondered if that was it. If so, next time I need happier, more uplifting sign! Or at least wait until I’m not in a public place. Everything is a trigger, everything brings up a memory. I would say it’s the time of year, but it’s always the time of year. After your birthday is Halloween and the holidays, and then we are getting back into diagnosis day and February, the beginning of the end. I am constantly plagued by the “what ifs” even though they won’t change anything. Initially, when you were diagnosed and during treatment it was “what if the treatment doesn’t work?” “What if you relapse?” “What if you die?” We imagined the worst case scenario and were terrified, but we couldn’t really imagine it. My thoughts went there but didn’t stay there. Because there was always hope. But after you relapsed it was “what if we had done something differently?” The wondering doesn’t do anyone any good but I can’t shut off those thoughts.

I’m still uncertain as to what I believe happens when you die, but one thing that I am certain of is that if you are still alive in spirit somewhere, you are with Pop-Pop and you should celebrate both days together. I would say eat lots of cake but you never were much of a cake person so have your favorite taco salad, and churros and ice cream. Daddy and I are going to celebrate your life with the same at your favorite restaurant. I’m sure you’re with your friends, probably planning some epic pranks. Please don’t forget to throw some signs our way amongst your partying. Here are just a few random pictures from some of your birthdays over the years.

I love you kiddo, to the moon and back, infinity times. There is so much more I want to say to you, but will keep that between us rather than on the blog. Just know that I love you always, miss you always, and look forward to the day we can be together again.

Love,

Mommy

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Scattered

I have been working on this post for weeks. I’ve wanted to write. I’ve needed to write. And yet I can’t put thoughts to paper. There is just too much going on in my mind. This time of year, back to work, doing my job virtually. I have a thought and then the thread just splits and splits again, and spreads, and spreads, forming an incoherent web. As a result, this post may be disjointed.

I finally got it together to write because of the date. Almost four years ago, in October or November of 2016, we had to look ahead and imagine what we would be doing four years later. We were sitting at Ariella’s Hebrew school, listening to the rabbi talk about bar/bat mitvah and choosing a date. Now Ariella was young for her grade so while most would be choosing a date for closer to 3 years from then, we were looking at closer to 4 years, just after starting 8th grade. It was a daunting task. Choosing such an important day, Ariella’s bat mitzvah, so far in advance (some schools don’t do this so far out but it seems more and more are scheduling b’nai mitzvah quite far out). Who could possibly know what would be going on on a specific day 3 or 4 years later? We put a lot of thought into the date, considering the time of year and dance season. Ultimately, since Ariella was young for her grade we wanted to wait until she was closer to 13. So we picked a couple of days in September 2020 ( only a couple to choose from because of the Jewish holidays) and one in I think January or February 2020, before dance competition season. We got our second choice, which was September 26, 2020. Tomorrow. Four years ago, when we weren’t sure what we would be doing, we would never have thought in our wildest imagination that instead of celebrating with Ariella, we would be grieving for her. We also of course never imagined we would be in a pandemic and her bat mitzvah would most likely have been virtual. This probably would have pleased her. She had said for quite a while she didn’t want a bat mitzvah. But after going to a few of her friends’, she agreed that she would have one, as long as her party could be a pajama party. Tomorrow. Tomorrow she should be becoming a bat mitzvah. When we were looking ahead in the fall of 2016, we were facing the unknown, as the future always is. We couldn’t believe we were already talking about her bat mitzvah. It seemed so far away. Just two or three months after submitting our 3 options for dates, Ariella was diagnosed. A few weeks or so after that we got the bat mitzvah date. We went from thinking about planning an exciting event, to filling binders with medical information. We went from an optimistic and carefree existence to wondering if Ariella would live to see her bat mitzvah. In that time from choosing her date, Ariella was diagnosed with cancer, went through 10 months of treatment, was declared no evidence of disease, relapsed, underwent another 9 months of treatment, had a bone marrow transplant, and died. Our greatest fear was realized. Ariella did not live to see her bat mitzvah. Tomorrow, instead of celebrating Ariella’s coming of age, we continue to mourn her loss.

On the recommendation of a friend I am currently reading (finished, now that I have finally come back to this post) Option B by Sheryl Sandberg, which she wrote after the death of her husband. Our losses are very different but some of what she says resonates with me, particularly this one quote that really struck me. It isn’t Sheryl’s quote but the quote of a woman named Virginia Schimpf Nacy. Her husband died at age 53, and six and a half years after that, her son died. She said “Both deaths are woven into the fabric of my life, but they’re not what define me.” Their deaths do not define her. I sat on this quote for a while. I turned this quote over and over in my mind. I thought about what it is that defines a person. Is it her personality? Her job? Her relationships to others? There are so many factors that make a person who they are and yet the only one that matters to me is that I am the parent of a dead child. My life, my purpose and meaning, or lack thereof, is currently 100% defined by the death of Ariella. How I think and feel and react is entirely through the lens of a bereaved mother. When your child dies, when your whole reason for being dies, how can that possibly not define you? I am a grieving mother. Not a second of any day goes by that I forget that, that I don’t feel it deep in my bones. Some days, some moments, I feel it more sharply than others, but it is always there. Following me. Inhabiting me. Driving my decisions. It may not be evident to others but it doesn’t leave me. I am forever changed. Maybe I never will feel like Ariella’s death doesn’t define me, or maybe one day I will find that my identity is not solely linked to my dead child. Today is not that day. If that day does come, I do know that as the author of the quote said, her death will always be intertwined in my entire being.

I really haven’t been well. This time of year, that used to be my favorite, now just brings more sadness and anxiety. September. Childhood cancer awareness month. I feel obligated to post, to spread awareness. But it hurts. I’m bitter and resentful that I have to do it at all. Why does it fall to the bereaved and the caregivers to advocate for something everyone should feel passionate about? When all I want to do is ignore it, I just can’t. Because if it helps just one child, it has to be done. CureFest, which we attended the past two years, is virtual this year (read here for more about our experience at CureFest https://lifeafterchildloss.net/curefest/). And I am so glad. Because I really do not have it in me this year to attend. Hearing all the stories of hope and success. Seeing the amazing and strong fighters and survivors. I am happy for them. I am. Of course I want everyone to have hope and be well. But I don’t have hope. And my child didn’t make it. And I am jealous. So very jealous. And seeing the hope and strength and fight brings me back to when we were there in 2017 and Ariella was almost finished treatment. We had the same hopeful and optimistic outlook. We thought in a few months we would be among the survivors. It was a celebratory atmosphere. And I want no part of it. I would have gone. For David. For Ari’s Bears. And there are many people I would like to see. But the rest. It’s just too much.

And now October is approaching. Ariella’s birthday. She should be looking forward becoming a teenager. Crisp air and the anticipation of the holiday season, beginning with Halloween, Ariella’s favorite. Reminders everywhere of what we lost, of what we are missing. Walking into Trader Joe’s, visually assaulted by pumpkins. This time of year every time we shopped in Trader Joes’ we came out with at least one pumpkin, sometimes several. Colorful leaves on the ground, crunching beneath my feet. Memories of corn mazes and hayrides and picking pumpkins and apples. Trick or Treating. Ariella in all of her Halloween costumes. Fall is for families.

What David and I want, more than anything, other than of course having Ariella with us, is a family. We are missing Ariella and all the things we did with her and we are missing her future as well. But we are also missing being a family. Being parents. We miss all of it. Rocking to sleep, reading before bed, first days of school, vacations, game nights, helping with homework, recitals. We miss the mundane daily routines and we miss the arguments and tantrums and eye rolls. We miss everything. The good, the bad, and the ugly. We want two things that mean anything and we can’t seem to have either. And before I get the comments about ways we can be parents or caregivers or still be involved with children, please don’t. We know our options. It’s not so easy as just deciding to be parents. So we are left adrift, trying to figure out “what next?”

Couple all of this with doing my job virtually, which is making me even more miserable, and everything is hitting me quite hard. At the gym I see a news story on TV outside of Hopkins. I see the Hopkins sign and the bridge that I drove under every single day from February 25-May 9 2019. If I look hard enough I see the room in which Ariella died. That same day at the gym I hear a song that Ariella danced to. It was a group tap dance. I watched her practice many times. She never got to perform it. I have two outlets. Exercise and work. But I hate my job right now. It is frustrating and ineffective and I have headaches every day from the screen. There is a reason I don’t have a desk job. All of this to say I’m struggling, more than I had been. Year two has been a hell of a lot harder than year one. And I feel much more lost.

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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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Back to School?

It seems that a lot of people think that kids belong back in school this fall. I don’t disagree. I think the kids are suffering in many ways and not only need to be in school for more effective learning, but also for that sense of normalcy. This has been a very frightening and uncertain time for adults, so just imagine how it is affecting the kids and teens. They may not express their fears and anxieties in obvious ways but how can they not be scared? Going back to school would allow them to go back to their usual routines, see their friends, and feel some sense of order. So yes, I agree that kids should be in schools. Provided strict safety measures are in place.

And therein lies the problem. I do not think there is any way safety protocols and procedures can be put into effect by the time schools are expected to open in the fall. In my urban school district for instance, on a good day soap is scarce, supplies are lacking, and the buildings are old and rundown. This does not lead to confidence that there will be PPE provided to staff and students, that schools will be cleaned more thoroughly on a regular basis, or that effective safety routines will be put into place. In one of our meetings discussing opening, there were lots of vague proposals including hybrid schedules and implementing physical distancing. But what was missing from the information was exactly how all of this is going to be implemented. What are the procedures for entry and exit? Walking through the hallways? How will classrooms be arranged? Who is providing PPE to staff and students? Who is providing materials for individual students since they won’t be able to share supplies? How will physical distancing be implemented and enforced? How will students be able to access their resource subjects? How will related service providers provide services? What are the protocols for staff that go to multiple schools, often in the same day? What about staff that go into homes? What are the procedures for cleaning? Who is going to provide the cleaning products? What if a child goes to the nurse with a fever? What if a parent sends a child to school with a fever? What happens if a student tests positive? Staff member? What if that staff member travels to multiple schools? What about staff that don’t feel comfortable returning regardless of the safety measures? What about high risk staff? And this is all just the safety concerns. If school districts want their staff to feel comfortable about returning to face to face instruction, these questions must be answered prior to the first day of school.

Those questions do not take into consideration actually providing instruction and related services. Will teachers be responsible for both in class and virtual teaching, essentially doubling their workload? Are related service providers who see infants and toddlers still expected to go into families’ homes? How will virtual learning and virtual services be provided? Overall there seemed to be a lot of difficulties with distance learning and yet we haven’t heard much about ways to improve. School districts should have been working on the safety protocols and distance learning plans since March and yet there seems to be no real plan or transparency. There is so much up in the air which leaves a very unsettled feeling. Not just for my school district, it seems to be a nationwide issue. And there is not much more than a month to figure out the plans, obtain supplies and materials and train staff. This is not enough time. It also does not give staff much time to figure out childcare.

If they were taking volunteers for staff to provide in person service, I would raise my hand so fast I would give myself whiplash. I have little thought of self-preservation these days. But how can anyone look at all of those questions that have not been answered and think that schools are ready to open? Someone commented on a friend’s post that of children Covid patients somewhere (I don’t recall where), a very small percent died which came out to be “only” 4 children. ONLY? ONLY? I’m not okay with that. No child should die and no child should die because things were rushed to be open without the proper protocols in place.

I realize this post has nothing to do with grief, cancer, or Ariella but this blog is about my life following the death of my daughter. I do certainly view things through a different lens now and if Ariella was here there is no chance she would be going to school in person and I would be terrified to return to schools thinking I could bring Covid home. And frankly, back to my previous theme of being tired, I’m tired of people saying kids need to be in school because they are not high risk, without considering the safety of the staff. My fear is that opening schools will end up being an experiment gone horribly wrong. And this is from someone who can’t wait to go back. I’d love to hear others’ thoughts. Especially from educators and parents.

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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?