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I am not Okay

If you were to ask me how I’m doing you would get one of several answers, depending on current mood and how honest I feel like being. Surviving. Hanging in there. Taking it day by day. But the truth is, I’m not doing well at all. I know I’m not alone in that. Plenty of people are not doing well. But it’s not the same. For the better part of 2 years we had to constantly be on guard. Make sure Ariella’s counts were okay before making plans. Plans cancelled at the last minute. Vacations cancelled. Witnessing Ariella miss out on the things she loved so much; dance, camp, school. The things we are all missing now. But the difference then was we were alone in it. We were missing life, yet life continued to go on around us. Constant reminders of what we were missing while we were camped out in a hospital room or stuck at home. I know that if Ariella was here it wouldn’t be a walk in the park. I know there would be frustration and complaining and attitude. I understand why parents are anxious and stressed and worried. But you’re not alone in this. There is a solidarity, a comfort in knowing the world is right there with us. I can’t speak for David but I felt very much alone throughout Ariella’s diagnosis and even more alone now, despite the support we have. Because there are few that understand how this situation affects someone who has already experienced significant trauma. PTSD is very real and very prevalent among bereaved parents. Everything about this is triggering. The fear of loved ones becoming ill. The constant reminders of hospitals, life support, ventilators, masks, all of it. Hearing people complain about homeschooling, being stuck with their kids. As I said, I know it’s not easy. I’ve been there, home or at the hospital with Ariella, when she couldn’t go anywhere. It was hard, especially when she knew her friends were doing things without her. But it was also fun, and rewarding, and special. We got creative and crafty. There were game nights and movie nights. Lots of time spent reading together. Please just keep that in mind when about to post on a public forum about how terrible it is. It is terrible in a lot of ways. And there is nothing wrong with venting frustration. But not in a public forum. When so many people wish for a second they were in this with their loved ones, whether a child, spouse, or parent.

It had been questioned if the cure is going to be worse than the problem, in the context of the economy. I have a very real fear about the cure being as bad as the problem, not financially but in terms of mental health. This isolation is going to take its toll on a lot of people and I worry about the emotional suffering people are having to endure. As I mentioned, those who have experienced trauma are likely to be experiencing PTSD or other symptoms of anxiety. Anxiety symptoms are ramped up for those who already had anxiety and those who didn’t seem to worry about anything are now getting a taste of what it’s like to live with anxiety. The world is on edge. Everyone is at the very least unsettled, but there are I’m sure a large number of people having difficulty coping. Even as an introvert I am missing the social interaction and connection. The gym was my release. It was the first thing I got back to after Ariella died and has been the only thing that has made me feel okay. I am grateful to my gyms for doing live stream workouts, but it’s not the same. And though my leg is healing, I still can’t run, which was my ultimate way of forgetting everything else and just being in the moment. I think in the end, some will come out of this much stronger, but others will be traumatized and continue to suffer. I was already suffering, not sure how much more of this fear, uncertainty, isolation, I can handle.

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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.

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Isolation? Fear? Been There, Done That

The country is in a state of panic. Mass hysteria. And I feel nothing. Do I worry about loved ones? Sure. But am I at all worried about myself? Not the least bit. I’ve lived through this. The fear, the need for quarantine, the worry I could pass something, anything along to my immunocompromised child. The worst for me has happened. This doesn’t phase me one bit. Other than the fact I’m wondering if there will be anything left at Trader Joe’s tomorrow when we do our weekly shopping.

This is serious. Of course it is. But yet people seemed to have lost their perspective. They seem to be more upset about what they are missing, or what their child is missing, rather than why they are missing these things. I completely understand the disappointment. I understand children, high school seniors, college athletes, being devastated about missing experiences and events. What I don’t understand is the complaining about it from the adults. Pain and disappointment are a part of life. This is temporary. Instead of complaining about how awful it is (not that people are dying mind you, but that your plans were cancelled), be grateful that this too shall pass. Be disappointed. Be sad. But stop fucking complaining about it all over the place. There are much worse things, like people actually dying from COVID-19.

I have pretty much given up Facebook (on the personal side, I of course still keep Ariella’s page going). Yesterday I made the mistake of going on. I went on to check if the schools had done anything because it is often on Facebook before emails are sent to staff. And what I found fascinating was not the number of complaint posts (and there were many) but who seems to be panicking and complaining. The cancer families I follow, the ones who should be panicking the most, who should be upset about more quarantines and isolation, are the ones who seem to be taking it in stride. Because this is their lives. They live this daily, virus or not. What I saw from them is the same thing I am feeling. Anger. Anger that this has been declared a crisis leading to immediate funds for vaccine and treatment development. Not denying that this is a crisis. But so is childhood cancer. And yet it is not taken seriously. There is no outrage. There are very limited funds to develop treatments. If the response to childhood cancer was similar to the response to the coronavirus, maybe just maybe there would be better treatments rather than decades old toxic chemo. What’s the difference? The difference is that coronavirus reaches everyone. Childhood cancer affects children and is “rare”. Yet more kids have died from cancer. So I’m not worried or panicked but I am furious. I am furious that childhood cancer does not get the attention it deserves because it doesn’t affect as many people.

I am also outraged over the behavior of many. Cleaning out stores. Stealing equipment that health care providers and the immunocompromised people actually need on a daily basis, not just in light of the virus. Hoarding supplies. There are still a lot of unknowns but it seems to me that most of us will be okay after a little inconvenience. And that inconvenience is necessary to protect those that may not be okay if they contract the virus. Acting selfishly, worrying only about yourself, is disgusting in these times. I read somewhere that people were having trouble finding baby formula. That is scary. If people would be reasonable. Buy items in a reasonable manner rather than clear the shelves. Then everyone would be able to get what they need.

I say I’m not worried. I’m not. But I understand it. If Ariella was here, I would be scared for her health. So I understand worrying about loved ones. But I just don’t get this mass hysteria. That scares me much more than the virus.

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Hope? What’s That?

One year ago today was Ariella’s last day of school. Ever. Of course we didn’t know this at the time. When she hugged her friends goodbye we never could have fathomed that it would be the last time some of them would see or talk each other. They made her cards and gave her gifts wishing her well with the bone marrow transplant. They said they would miss her and couldn’t wait for her to be back in school with them. We knew she wouldn’t be going back for that school year. But we never in a million years thought that she would never get the chance to go back. That she wouldn’t finish middle school, go to college, get married, have a family. A cancer diagnosis forces you to face your child’s mortality but that is then pushed aside by hope, and optimism. The thoughts that Ariella may not survive were there or course but I never fully believed that she wouldn’t make it through. You can’t think like that as a cancer parent. Our child is going to be the one to survive. With every bad scan or relapse the possible mortality slaps you in the face again. But then life gets in the way again. In between the treatments and bad times were plenty of good times, fun times. Thoughts that your child may die are not at the forefront, though they do hang out in the background rearing their ugly heads at random, or not so random times. But we were able to go on living and enjoying life, even after Ariella relapsed. We were worried and scared but always thought we would get through it. That she would get through it. We never got to the point where we lost hope, because we still had options for treatment. And then she was eligible for the transplant. The hope carried us through. Because how can you live that kind of life without it?

I am now living a life without hope. I have no hope that life will work out in my favor anymore. I have no hope that I will be okay. I have no hope of ever being happy again. Because what I want most, Ariella, to be a mother to Ariella, has been stolen from me. I can’t live another 40 or more years without my daughter and be okay. Or be happy. Living a life in pain, in constant sadness, in yearning, in missing the one you love the most, is no kind of life at all. It is dark and frightening, overwhelming and daunting. I don’t want this life, one as a childless mother.

Every day I walk through the halls of schools. I see students getting books from their lockers, sitting at their desks, socializing with their friends. I work directly with children, some close to her in age. And I picture Ariella in school. In her uniform, getting in trouble with the teacher for talking, gathering at the lockers with her friends. And it shatters me again and again. Not to where I want a different job, because I don’t. I like my job and I like my students and I enjoy working with them. But at the same time it is often incredibly difficult. I wish I didn’t have to work at all. Some bereaved parents find they need something to keep their days filled, but I just find it exhausting. So fatiguing to pretend to be okay when I’m not. I can’t find the words to describe, but it still doesn’t feel right to me to do anything seemingly normal when my life is upside down. I still can’t see the point in any of it. Nothing matters. I was never much of a talker but I talk even less now. I don’t like small talk, I don’t want to make conversation. Because most small talk is pointless and a lot of conversation is outright painful. It is all just so futile and I just want it to be over. I’ve read in some articles that suicide rates are high among bereaved parents. And I get it. This life just sucks.

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February

It’s here. It’s well underway. February. The month that started it all. It actually started a year prior, in February 2016, with the death of my father. He died on the 25th and was buried on the 29th. I hate that it was such an unusual day. I’ll never be able to look at leap day as anything other than the day I buried my father. February 2017. Diagnosis day. Biopsies. Scans and tests and procedures. Appointment after appointment. Waiting. More waiting. We knew we were dealing with cancer but it took weeks to confirm the actual beast we were facing. Waiting to start treatment, worrying that the cancer cells were rapidly multiplying, taking over while we had to wait to find out what type of cancer, which would determine the treatment. Central line placement, pneumothorax, chest tube. All of this before treatment started, which finally began in March. Did that delay allow those microscopic cells to start taking off through her blood stream, unable to be detected by chemo? Or was it our delay? Brushing off her pain as an injury that would get better with rest? Or was she doomed to succumb no matter when we caught the cancer? February 2018. Fraught with anxiety. Recently off treatment, in between scans. Everything still so fresh in our minds, worrying about relapse. We got lots of congratulations at that time, but I just couldn’t fully celebrate. Because I wasn’t convinced the cancer wouldn’t return. February 2019. Started out so hopeful. Radiation did the job it was supposed to do. Ariella was cleared for bone marrow transplant. More tests and scans. More appointments. And some optimism and hope mixed in. February 11, spent all day at Hopkins for blood work and baseline tests and such. February 18, admitted for what we thought would be 4-6 weeks. Starting the pre-transplant radiation and chemo. Actually managed to have some fun in the hospital. We (thought) we knew what we were in for so were making the best of the situation. February 26, the day we were all waiting for. The day we hoped would cure her for good. The day that set her death in motion. Bone marrow transplant day. What people often call a “re-birthday”. I would give anything, anything to roll back the clock to that day and change things. Not do the transplant. Or do it a week earlier, or a week later. Anything that could possibly change the outcome. Ariella didn’t end up in the ICU until March but February started it all. And it kills me to think about what could have been, had it all gone well like we expected. Why? Why did this happen?

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No Control

I went to a shooting range the other day. I had never in my life held a gun before, unless you count a Nerf gun or BB gun. I was nervous at first, handling this deadly weapon. Such a powerful feeling, to feel the heft of the gun in my hands. For the first time since Ariella’s cancer diagnosis three years prior, I felt truly in control of something. Nothing like a cancer diagnosis to make you realize how little control we actually have over our lives. Sure there are plenty of things we can control, but ultimately, we are not in control. Anything can and does happen no matter the precautions we take. But at the shooting range, facing that target, I was the one in control.

Shooting a gun requires intense focus and concentration. There was no room for the stray thoughts and images that are usually burned in my mind. This was the only time since Ariella died that my mind was clear of everything but what I was doing in that moment. For any other activity in which I am engaged, no matter what it is, my mind is pulled in multiple directions, leaving only a part of my thoughts with the task at hand. My ability to concentrate has significantly declined. My memory is shot. Mornings I typically get the coffee pot ready for David after I pour my coffee. The other day I put the coffee in but not the water. One night when cooking dinner I was looking for the Parmesan cheese. I was looking everywhere in the fridge, knowing we had an almost full container but couldn’t find it. I resigned myself to not using it but when I turned back to the counter, there it was, mocking me. I had zero recollection of taking it out of the fridge. I start things but don’t finish and feel incredibly scattered. In fact, I started writing this post a week ago but couldn’t put down more than a couple of sentences at a time. I have plenty to say, just can’t seem to translate that to actual writing these days. Strangely enough the one thing that I can usually concentrate on is reading. I still get distracted and may need to read a paragraph more than once, but I can get through books as long as they hold my interest. So while reading doesn’t keep the pervasive thoughts completely at bay, it does help.

None of this has gotten any easier. In fact it continues to get harder. I am just missing out on so much and each day is another day I’m missing Ariella. Each day is another day of experiences and living that I don’t get to share with Ariella. Each night I lay in bed, missing the days when Ariella and I would cuddle together with books. My whole identity was taken from me and I’m struggling to move forward living a life in which I find no meaning. Before Ariella died I wouldn’t have said she was the only person or thing in my life that gave me purpose. But now that she’s gone, none of the rest of it matters. Anything else that may have given me reason before, just doesn’t cut it now. Pretending to live life is exhausting. I don’t want to do this anymore.

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So Tired

I am tired. So very tired. Even when I get enough sleep, which doesn’t often happen these days, I never wake up feeling rested. Most nights I fall asleep without issue but staying asleep is another story. I toss and turn and have vivid dreams and I cannot remember the last time I slept through the night. Even when I take something to help me sleep I wake up feeling like a truck ran over me. On top of this debilitating sadness gripping me at my core, I am so horribly fatigued. I function, I go through the motions, but barely. I know I look okay to the outside world but I am two separate people. The fake me, the one that puts on a mask just so I can survive, and the real me. The one who no longer cares about anything, life included. The one who is silently screaming. The me that is numb to everything, except the constant pain, the constant missing. That I feel intensely, constantly, with no reprieve. But joy, happiness, contentment I am numb to. I don’t feel pleasure or peace or enjoyment. I feel completely dead inside. Every day I still look forward to the time I can reasonably go to bed so I can finally (try to) sleep through it all.

I haven’t written in a while. Not because I don’t need to, or because I’m doing better (whatever that means, and I’m not). It just feels so pointless. It’s all doom and gloom and nothing’s changed and I just want out of this life. I survived Ariella’s birthday, survived the holidays. But so what? It’s not like I would get through those days and all would be okay. There is always another date, another milestone, another something ahead. There are triggers everywhere. Reminders everywhere (as if I could forget). She is everywhere. But she’s not here. Where I need her to be. And because of that nothing will be okay again. Destined for a life of sadness and pain and longing. People who have been down this road swear that happiness can be found again. I believe it. But I don’t believe there will ever be true, untainted happiness. Happiness not accompanied by pain. And the thought of that is dispiriting. I have a very bleak future ahead of me and I still fantasize about driving my car off the road. I would never do it but I understand suicide now. I never did before. I never thought things could be that bad. But I understand how someone can be in so much pain and feel so hopeless that they would want to end it all. When life has seemingly lost all meaning, what is the point in living? Especially knowing you are subject to a lifetime of pain and heartache. So this is where I am.

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The Holidays are Over. Now What?

The holidays are behind us. The merriment, festivities, celebrations are over. Should be a relief, yes? After all, holidays without a loved one are anything but happy and joyous. So if we can get through those days we can breathe a sigh of relief, right? WRONG! Now that the holidays are over we are approaching the dates. Diagnosis day. The day my father died. The day Ariella was admitted to the hospital for her bone marrow transplant. The day she got the transplant. The day she went to the ICU. The day she was intubated. And you all know the rest. The hours and hours spent in the hospital from February to May. The initial joy, hope, and optimism leading quickly to worry, fear, and devastation. The weather changing the seasons shifting, while we were trapped in the hospital room praying and praying for a positive outcome. Months of our lives, never for a second thinking that Ariella would never see the outside of a hospital room again, until that final setback. Until there was nothing more that could be done. Until we had to make the decision to stop treatment, stop life support, and say goodbye to our daughter. How can life turn that quickly? How can the vibrancy and exuberance of a child be snuffed out too soon? With no warning? We knew she wouldn’t feel great after the transplant but we never imagined the nightmare that awaited us. If only we could. Maybe we would have made different decisions, done things differently. The “what ifs” slay me.

We are in a new year, a new decade. One in which Ariella never lived. Evidence that time continues to move forward no matter how much I will it to stop, turn backwards, reset. The only comfort is that the passage of times means I’m that much closer to being reunited with Ariella. That time cannot come soon enough. I don’t know how I am going to get through these days, these years, these decades without my girl. This was going to be an exciting year. Ariella’s Bat Mitzvah. Entering the last year of middle school. A cruise finally taken that we had to cancel when Ariella was first diagnosed. Dancing and getting back on stage again. Two years ago, 2017 into 2018, we celebrated Ariella ringing the bell for finishing treatment, just to relapse 5 months later. In January 2019 Ariella rang the bell after finishing radiation and scans following radiation showed no evidence of active disease. We were thrilled she was eligible for bone marrow transplant and were optimistic that if we could just get through that and her recovery, that 2020 would be a fantastic year of health and joy and no evidence of disease. 2018 was supposed to be that year for us, but her relapse took care of that. 2019 was then supposed to be the year that she was cured. Instead of celebrating life and new beginnings in 2020, all I can think about are the countless years ahead I have to get through.

I’ve realized this is a common theme among bereaved parents, especially of those whose children died within the last year. I’ve seen many posts about how they just wish time would stop. They don’t want to enter a new year without their child. They don’t want the evidence that time moves forward, that life goes on. But the other common theme is being glad to be one year closer to being reunited, one year closer to no longer having this pain, one year closer to no longer having to live without our children. I have no idea what this year holds for me. I have had several tell me they hope this is a better year. But how can it be? Because even though Ariella died last year, her absence is forever. I guess a better year would be one without a tragedy, but it’s still a year in which Ariella never lived. And honestly, I’ve been through, am still going through, the worst thing a person can experience so anything this year throws at me will never compare to experiencing the loss of my daughter. I was never big on New Year’s Eve but I did look forward to the fresh start of the new year. But now I just don’t give a shit. Whatever happens, happens. Just another 12 months to suffer through.

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Too Many Funerals

Yesterday David and I went to the funeral of another beautiful young woman who also died from Ewing’s Sarcoma. That makes 3 funerals for children/teens we attended in just 7 months. This doesn’t count the funerals we would have liked to attend had they been close enough in distance. I haven’t kept track of how many children I know of that have died since Ariella but there have been at least four more whose funerals I would have attended because though I did not meet them in person, I knew them. We followed each others’ stories and offered support. They are family. There have been countless others though that I am aware of that have died, that I heard about through groups and friends. One of Ariella’s best friends attended this same funeral. That makes two of her friends that died in under a year. Children should not be making the funeral circuit. Neither should adults our age for that matter. It’s horrific enough to be a child and have cancer, but to have to watch friends die is absolutely shattering. Not only are they experiencing significant loss, but they are also faced with their own mortality. Because they know that cancer is cruel and unfair and there is no rhyme or reason to who survives. And they also experience survivor’s guilt. But that doesn’t stop these kids from becoming good friends with each other. They know the love and support and friendship is worth it, even if they experience loss because of it. Kids shouldn’t get cancer. Kids shouldn’t die. Kids shouldn’t have to attend funerals of their friends. I am so infuriated. Not enough is being done to change things. Not enough is being done to find a cure. And kids keep dying.

It was a reunion of sorts. Families we see once or twice a year at cancer events. There with their daughters, Ariella’s age. I’m so glad they are doing well. But I also wonder, why not Ariella? Why was she one of the ones who didn’t make it? She had everything going for and a good prognosis at diagnosis. The doctor that diagnosed Ariella was at the funeral. And he said that Ariella’s death really hit him hard. Because in his words, “she was supposed to survive.” And in the same year he lost another pediatric patient that he diagnosed. He said that about 20% of his practice is pediatrics because he is a sarcoma specialist. After he diagnoses a child he refers them to the pediatric oncologists. Twenty percent of his patients are children and two died within 7 months.

Being thrown into the cancer world means you are surrounded by fear, anxiety, and of course, death. Several had expressed how hard it must have been to attend the funeral after attending the funeral for our own child. But we wouldn’t have missed it. And my pain wasn’t magnified, or triggered. Because the pain is always there. Of course it brought me back to Ariella’s funeral, but many things do. But more than that we were with our cancer family. Those that provide support from near and afar. And while I am so very jealous that Ariella is unable to be with the other girls, I am glad to see them doing great. Because they are the hope and strength that permeates the cancer world alongside the fear. We didn’t choose this world, this life. No one would. But once in it, there is no escape. And we wouldn’t want to escape, even if Ariella survived. Because the love and warmth is like no other. And we get to know and care about many other children and families. That doesn’t go away. Which means we continue to celebrate the highs and feel the depths of the lows, providing support when needed. But lately there have been too many lows and not very many highs. So yes, attending the funeral of another child, young adult actually, was hard. But would have been hard no matter what. But hearing about all the lows, the devastating news, the treatments that aren’t working, is hard. Life is unbearably hard.

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2019

The year Ariella was supposed to be "cured"
The year of hope and celebration
Her "re-birthday"

Instead it's the year when all was lost
The year of devastation and despair
Of yearning and anguish
Her death day

The last year that Ariella was alive
The last decade that Ariella was alive
Never have I wanted to turn the calendar less
To enter new beginnings, new years, new decades
Without my sweet girl