Month: July 2020

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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.