Tag: child loss

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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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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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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

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A Change of Scenery

A dear friend took me away this weekend. We became friends when our daughters were in preschool together. As our girls got older and went to different schools their friendship drifted apart, as happens. So my friendship with the girl’s mom also faded. It’s true our kids often dictate our relationships. This friend never completely disappeared, though, and she made a point to really be there when it truly mattered. She planned this trip away, not thinking it would fix anything, but hoping I would find some peace and relaxation. The change in scenery and weather was very welcome. The vitamin D therapy I was looking forward to didn’t quite happen because we didn’t have much sunshine, but it was warm and mostly dry so we were able to spend a lot of time outside, which is always good for the soul.

At dinner one night my friend asked if I ever have periods of happiness. And I didn’t have to reflect on the answer at all. The answer to that question is no. I have had smiles and moments of laughter, but I cannot call it being happy. I might find something amusing, laugh at someone’s joke or a funny story, but I can’t call those moments happy. They don’t feel happy, even in the moment. Because Ariella’s absence is always on my mind so even what should be joyful moments, just aren’t. She also asked if I ever feel just relaxed. This time I thought about it but again the answer was no. The closest is when I’m asleep but lately I’ve been having very vivid dreams. Not necessarily about Ariella or even remotely related, but because they are so vivid I do not wake up feeling rested. I have a sense of anxiety and unease, even in my slumber. There are times I come close to feeling relaxed. When I’ve participated in a therapeutic activity such as painting pottery. Or after an intense workout. Following time at the spa. But I never fully get there. Because my mind is going a mile a minute with thoughts of Ariella. Always. This is why grieving is so exhausting. Because there is no break, no time-outs. It’s constant and in your face. Grieving is always being on guard, watching out for triggers, being invaded by pervasive thoughts. So relaxing is next to impossible. It’s when things are the most quiet, the most calm, that the brain won’t shut up and allow any kind of peace.

I enjoyed my trip away. But even though it was a place Ariella never had been, she was with me everywhere. In the cute little towns we walked through and adorable stores in which we browsed. The little items that she would have loved and asked me to buy her. The paper store with cute and quirky items. A store that she loved to go into. The festive decorations and the families spending quality time together. The beach and ocean that she loved so much. She was with me in the hotel, in memories of all of our hotel stays. She was with me on the plane, in thoughts of the travels we took. There was so much she would have loved, that I wanted to share with her more than anything. I could picture her delight at all of the dogs we saw. Her awe at the pounding surf. Pure joy as she ran along the sand and put her feet in the water. So though the time away and spent with a friend did me good, the constant feeling of emptiness followed me.

Anytime I’ve been away since Ariella died I’ve asked her to give me some sort of sign that she’s with me, even when I’m not surrounded by her things. And there were definitely signs. A heart-shaped cloud when we were horseback riding. A butterfly that barely kissed my skin before flying off. Bunches of sunflowers. A feather falling to the ground in front of me, seemingly from nowhere. Fight Song playing in the restaurant at breakfast. Things that may be construed as signs always give me pause. I love to believe they are real. But even if they are, they don’t make the present any more tolerable. No matter where we go, what we do, where we travel, there will always be someone missing. We will always feel incomplete.

Last night was the first night of Chanukah. And I’ve done nothing to mark it. Usually I would make latkes from scratch, and David would make chicken noodle soup from scratch. We would light the candles and Ariella would open a small gift each night. There is no holiday without her. And yet, there is. For everyone else anyway. Evidenced by the cards we are receiving with smiling, happy, intact families. Often just pictures of the kids. And it kills me to open these cards. It’s great to be thought of at the holidays. But it doesn’t feel like people are thinking of us when they tell us to have Happy Holidays! with their smiling children. Because clearly the holidays aren’t going to be happy for us. And it just feels thoughtless. The cards I was grateful to get are the ones that were personal. There was a nice handwritten note. It was relevant to us and our lives now. There was thought and effort put into it. I know that people probably don’t know the right thing. They don’t want to exclude us. But please think about what you are doing before you do it. When it comes to us, or any other grieving family, think about how it might feel to get a picture of your perfect family when ours was torn apart. Our lives are different now. We are different. And thought and care needs to be put into a relationship with us for it to survive. What works for the majority will no longer work for us. And I’m not saying this to make anyone feel bad. I know intentions are good. But I also need to protect myself. And hopefully help others navigate relationships with other grieving families. Because I know people want to be there, want to offer support, and often just don’t know how. I don’t want people to feel like they have to walk on eggshells, but caution does need to be taken. I’ve never liked to be one who needed taking care of. And I certainly don’t like to admit it now. But I can’t just let things go and there are things that just really hurt. I appreciate everyone who is learning along with us and walking along the rocky path with us. I know it’s not easy to be friends with a bereaved parent and there are many that are choosing this, and quite a few who have chosen this recently so are clearly not doing it out of a sense of obligation. Like an old friend/acquaintance I caught up with over the weekend when I was away. We had been in school together since elementary school but never really spent time together as friends. But that didn’t stop her from reaching out repeatedly since Ariella died. Trying to learn how to support us, and others who may be going through something similar. Everyone who is still here for us. Who are still present. Really want to be here. They are choosing to be here. And I am eternally grateful to all of you who are choosing to be there for us. Even if missteps are taken, or the “wrong” words are uttered. I know who is sincere and that is what matters. The effort, the texts, the company. That is what matters. And I couldn’t get through the days without you.

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Dear Lily,

When I first heard of you, you were a story. A name without a face. A survivor. When Ariella was initially diagnosed our doctor gave me your mom’s name and number. He told me about this amazing girl named Lily, who was a survivor of Ewing’s Sarcoma. He told me how great you were doing and that your mom would be more than happy to talk with me about anything. At this point you were more than 5 years cancer free (from what I recall). The doctor gave me major hope that day.

It took a little while but I did eventually get in touch with your mom. We didn’t talk much but it was comforting to know someone who had been in the same situation. Then one day Ariella mentioned a girl named Lily that she met in clinic. Didn’t say much, just that she met a nice girl. The next time I was there I met you and your mom. It took several times after that to put together that you were the Lily the doctor had told me about. And I was devastated when I realized that. Because it meant that you had relapsed, even though you should have been considered “cured.”. But I continued to have hope. Because you seemed so strong and happy anytime we saw you in clinic. You always had a smile on your face. You would come in with your text books and do school work, or play games with your family. It warmed my heart. Ariella always checked the board to see if you were going to be in clinic when we were there. Even if she didn’t say much, she always wanted to say hi. I’m sure she looked up to you and related well being that you both had Ewing’s. And though you were older, you were one of the closest in age to Ariella among those she saw regularly. Ariella loved doing the photo shoots with you and it was you that helped her build her confidence to do the pictures with her bald head. She saw you frequently in clinic rocking that look and commented on more than one occasion about how pretty you were. You had a confidence that is hard to come by and Ariella admired you.

Even though you were going through your own stuff you always took the time to reply to Ariella’s texts. She was happy to have someone to ask questions to and commiserate with. It helped her to not feel so alone. Because the truth is, no one who hasn’t had cancer could understand what any of you went through. I’m glad she had you.

When I saw you at CureFest I was surprised and devastated to hear that your treatment wasn’t working. Surprised because you were mostly smiles and just exuded pure joy. You were happy to reunite with your friends and passionate to advocate for childhood cancer research. You spoke beautifully and eloquently and it was heartbreaking because it was evident that you were also hurting. Despite your illness you made it a point to come to Ariella’s birthday celebration at Build-a-Bear. That was so special to me and I hope I effectively conveyed my appreciation to you that day. It can’t have been easy to be confronted with the death of someone who had the same illness as you. But honestly, that’s where all you kids have amazed me. You forge friendships knowing the outcome is unknown. Knowing you may lose in the most permanent way many of those friends. And yet that doesn’t stop you from loving them. And you support each other through it all. Kids shouldn’t die. And kids shouldn’t see their friends die. We had to tell Ariella of several children that had died, only one that she had personally met. And I hated to do it every time. Because it would force her to face her own mortality. Yet all of you had the brightest spirits. Nothing could dim your light.

Friendships forged in the cancer community are different than any other relationships. I was grateful to meet you and your mom. You both always had bright, beautiful, smiles and being around you just made it feel like everything was going to be okay. When I heard you relapsed again the same day Ariella died, I was heartbroken all over again. Because I cared about you too. You were our original hope story and I needed you to be okay. Someone has to survive, right? If not my daughter than at least someone she loved and cared about. Someone we all cared about. You heard that your friend died and then your world fell apart once again. But that didn’t stop you from making your voice heard. You were an inspiration, not just to Ariella and your other friends, but to me as well.

I was at work when I heard that you died. It was the end of a day that was already a struggle for me. I hopped onto Facebook briefly when I was making copies and I saw your mom’s post. And the tears I was fighting all day finally broke free. I am heartbroken for your family and friends. Another family ripped apart by this devastating disease. And I am so sad for you. You had so much potential. You were going to do great things. You had already done so many great things. The world lost another amazing person. It was an honor to know you Lily. The world is not as bright without you in it. Thank you for inspiring me and inspiring Ariella. I hope you two are dancing and singing and doing your make-up together. You will be missed.

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Dear Ariella,

The other day I saw a picture that I wanted to show you. It was a bear that had jumped on the trunk of a car. It reminded me of the time we were on our way to clinic and heard the news story of a man jumping on the hood of someone’s car while it was moving. You were in shock at the story and as soon as we got to clinic we looked up the video. I wish I could have shown you this picture. There are very often things I want to share with you. Cute animal pictures. Funny videos. A funny story to tell you. Things I know you would laugh at. I miss your laugh. So infectious. Could always get me started laughing, no matter my mood.

I talk to you every day but I wish I could really talk to you. Not that I have much of anything to really say. Nothing has changed and yet everything has changed. How can my life look so much like it did before, when it is completely altered? It’s a paradox. What would I tell you if you were here? The same I tell you even though you are not. That I love you more than words can express. That I miss you so much it physically hurts. That I beg everyday to join you. That I would trade places with you in a heartbeat. I would tell you how sorry I am that you were sick and miserable and scared and that I’m sorry I couldn’t save you. I wish we had done things differently. I wish we could go back. I wish, I wish, I wish. I would tell you about Ari’s Bears. About how much it has already grown. About how it hurts so much to do this without you but that we have to do it, for you. About how unfair it is that you never got to see what you started grow into something so amazing. You never got to see your dream fully come to fruition. But if you were here I wouldn’t have to say any of this.

I am really struggling lately. Who am I kidding? I’ve been struggling since the day you died. But everything seems magnified these days. I’m not sure why. I like to blame it on the holidays but I don’t think that’s it. Yes the holidays suck but I don’t think that’s what’s going on here. Each day without you I miss you more and more. I have your face memorized but I worry about one day forgetting, so I stare at pictures even though looking at them feels like a knife through my heart. I do the same with videos because it breaks my heart to think I may one day forget the sound of your voice. The sound of your laugh. Even how you sounded when you were angry, frustrated, or whining. I don’t want to forget anything, and yet it’s inevitable. Images fade, memories grow dim. And I can’t bear that. And each day is closer to that happening. On the other hand, each day is one day closer to being with you once again.

I don’t know why you had to go. I don’t understand why any of this happened and I never will. I’ll never accept it, I’ll never be okay with it. I do know that my life was changed in amazing ways I could not possibly have imagined the day you were born and once again, horrifically, when you died. We were supposed to have a lifetime together. I was supposed to watch you grow up, start a life of your own. I’m sorry. I am so, so sorry. You were supposed to live. I was supposed to be a mom but now I’m a mom with no child. I just… I just don’t know. I just don’t think I can do it. I know you would want me to be happy and live life but I just can’t right now. Loving you and missing you takes everything out of me. It’s just so damn hard and my will to survive is nonexistent. But while I am mainly still just going through the motions, I will do everything I can to ensure that your legacy stays alive, as hard as it is. Your life mattered. You mattered. You still matter. And you always will. I hope that you are dancing up a storm and pranking everyone you meet. I hope that you and Pop-Pop are together and wreaking all sorts of havoc. But mostly I hope that one day we will be together again.

I love you to the moon and back times infinity,

Love,

Mommy

Well, I often write and then schedule my posts to be published later. So I didn’t publish this right away. Not long after I finished this letter to you I learned that Lily died today. I am devastated that sweet Lily died from this horrible disease. The world is most definitely less bright without you and Lily in it. I hope that you were there to welcome her with open arms, and silly string. I’m sorry that friends and kids you know keep dying. Take care of each other and take care of us. Love to you and love to Lily.

Remember how I told you I have been struggling even more lately? Maybe this is why. The continuous bad news. Which happens when you are friends with families with a cancer diagnosis. You know some are going to relapse and some are going to die. And I’m just so tired of kids dying. Each one hurts, even those I haven’t met in person. As you know these people become our family and just as heartbreaking for us when they die. This is life now. Being sad. Missing you. Bracing for bad news. Funerals for children. This is not how it should be. I wish I could take comfort in knowing you are no longer in any discomfort but I can’t. Because I want you here with me. My guess is there are no feelings of sadness where you are but I wonder how it feels for you when friends and other children join you. I hope that it’s all sunshine and rainbows and unicorns with no regrets. Until we meet again.

Love (again),

Mommy

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I Miss Her

I miss her. It’s that simple. And yet it isn’t. My emotions are much more complicated, much stronger, all encompassing, and overwhelming. But what it all comes down to is missing Ariella. Missing her smile. Missing her voice. Missing her hugs. Missing reading to her. Missing cooking her dinner. Missing picking her up from school. Missing watching her dance. Missing her beautiful brown eyes. Missing playing with her hair. Missing my NY partner and sushi buddy. Missing buying and wrapping gifts. Missing seeing her face light up when she got just what she wanted. Missing packing her lunches. Missing her silly games. Missing her pranks. Missing everything.

I never thought you could miss something that hasn’t yet happened, but I do. I miss talking to her about boys. I miss teaching her to drive. I miss planning her Bat Mitzvah. I miss watching her graduate from high school. I miss sending her off to college, then graduating. I miss watching her get married and starting a family. Everything we were looking forward to I miss immensely. It is such an intense feeling of yearning that is impossible to describe.

I am just so very sad. Again seems kind of simplistic but that’s what it is. Profound, pervasive, sadness. It’s impossible to take joy, see the beauty, enjoy life, when I’m this sad. It’s a shadow. A dark cloud hanging over me. Making it futile to even hope for a happy life from this point on. I can’t imagine ever being happy again. And if I am it will never be true happiness. There will always be sadness darkening the edges, invading my spirit, putting a damper on any occasion.

I don’t want it. I don’t want a life of sadness. I want to go back to normal. Happy. Carefree. I can never get that back. And that is oppressive. When people see me they probably think that I’m okay. I look okay. I function. I work, I exercise, I see people. I have Ari’s Bears. But I’m dying inside. I’m never okay.