Tag: grief

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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.

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Seven Months

It’s been seven months since my heart was ripped out of my chest and shattered into a million pieces. Seven months since everything changed but also stayed the same. Because besides living without my heart, my center, everything else is the same. I get up everyday, exercise, go to work. The sun still shines, the world still turns. Day becomes night becomes day again. People continue to live their lives. We continue to live our lives, even if we are just going through the motions. Everything is vastly different but impossibly the same.

Seven months and already the calls and messages are dropping off. I get it. I do. People have their own lives to live. They have other things to think about. They aren’t living with the devastation every day. We are not the first thing they think about. But you would think that family would be there from the beginning and that they wouldn’t disappear. And most of my family has been great. But it’s friends that have really stepped up. In some cases people I barely knew before who have gone out of their way to be present. Friends going through their own shit still make it a point to let us know they are present. And I am eternally grateful for those still here. I still need you. I will need you for a long time. Maybe forever. I may not say it or ask for it. It is very hard for me to be the one reaching out. I try to acknowledge every text and message. But sometimes it’s just too much. And sometimes I forget. But every text and message and phone call is appreciated. It does help to know I’m supported. That I’m being thought of.

I forget a lot of things these days. If I don’t respond to a message immediately I likely will forget to respond. Yesterday I made coffee and forgot to drink it. I couldn’t remember if I fed the dog. I forgot to leave something at the door for someone (though he forgot to pick it up so at least that worked out). If I don’t write it down it won’t get done. But even then I often forget. I need to set alerts in my calendar to really remember things. This is grief brain. It’s a very real thing. I am still in a fog much of the time. In my own world, where everything is hazy. I can’t see clearly. It’s a chore to get from point A to point B. Doing anything takes significant effort even if it doesn’t look that way. Because my mind is in the past. I am living in the past. Happier times. Wondering “what if”. Just, everything. This isn’t living. It’s merely existing.

I’ve seen some memes or posts saying things along the lines of 2019 sucked, here’s to a better year next year. But next year can’t be better. No year can be better. Because every year from now until I die is a year without Ariella in it. Maybe the sentiment is the hope that nothing tragic will happen but nothing worse can happen. I am living through the worst thing that could possibly happen to me. So I’m just in for decades of bad years.

I panic at the thought of the next few weeks, few months, few years. My respiratory rate increases, my heart races, and I shake. There is a pounding in my head, a lump in my throat, and pain in my stomach. Grief is physical. It beats you up, shreds you, and kicks you while you are down. It manifests in so many ways but I find for me sadness, apathy, and anxiety to be most prevalent. The anxiety has ramped up lately, I’m guessing due to the time of year. I just don’t know how I’m going to get through this.

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Be Fucking Merry

There are a lot of demands this time of year. Go shopping. Hit the sales. Buy gifts. Be merry. There are also a lot of complaints this time of year. Complaining about the chaos. Complaining about the money. Complaining about family obligations. The focus seems to be on what has to be done, rather than on what’s most important about the holidays; being with friends and family. What gets me though, is that people bring this on themselves. It’s not necessary to go all out. It’s not necessary to spend a fortune. Most of what is complained about is not necessary to have a meaningful holiday. And hearing the complaints now make me want to scream. I want to yell at the top of my lungs that none of it matters if you have your family with you. Because it doesn’t matter. Please, don’t lose sight of what is important. Because there are many people who would trade places with you in a second. There are family members missing from the dinner table. There are fewer presents to be bought. One less person to help decorate. Everything can change in an instant. Why spend precious time on things that don’t really matter? On things that aren’t bringing you joy but rather annoyance and frustration? When in the end it’s not what you have, but who you are with that matters.

I always loved this time of year. I enjoyed the festiveness. I liked shopping, trying to find that perfect gift. I would get so excited for Ariella to open her gifts, one small gift for each night of Chanukah with a bigger gift the last night. She appreciated everything she got, no matter how small or inexpensive. She was easy and fun to shop for.

So many traditions surround the holidays. We always made latkes and chicken noodle soup one night of Chanukah, both from scratch. We would drive around the see the light displays. Go to the train gardens. See the Nutcracker. After Thanksgiving Ariella would help decorate my aunt’s Christmas tree and set up the Christmas village. She would decorate cookies with her cousins. Though we are Jewish we have family that is not. We spent Christmas Eve with one side of the family and Christmas Day with another. New Year’s was spent with our neighbors and their daughters, last year adding a bunch of Ariella’s friends into the mix. There was always tons of food, sparkling cider for the kiddos, and then Ariella and I trying to make it to midnight. She made it twice. It was always a very busy time of year but I wouldn’t have changed a thing. I enjoyed the busyness. I looked forward to all the family time. We had a lot of fun.

Now all the traditions mean nothing. Ariella is not here to share in them anymore and I want nothing to do with them. Holidays are about family and my family has been torn apart, with the most important person gone. I don’t care about any of it and plan on ignoring all of it, including my birthday, over the next few weeks. I won’t be buying gifts for anybody. How can I shop for others when all I want more than anything is to be able to shop for Ariella. I don’t want to acknowledge any of it. Without Ariella the holidays mean nothing.

It is really hard to be anywhere this time of year, surrounded by reminders of the holidays everywhere. I had to run into a store the other day and I barely made it. Walking past the holiday displays. All the small gifts items that Ariella would love. The clothes she would ask for. Hearing the Christmas music. The holidays are the topic of conversation this time of year. I don’t want to be around happy, merry people who are excited for the upcoming weeks. I can’t relate anymore. I don’t want to be merry. I don’t want to partake in any of it. I don’t even want to hear about it.

Every day it’s a new obstacle. I’m constantly walking through a minefield and this time of year there are land mines everywhere, on top of the constant grief. No place is safe and I just want to curl up under the blankets and not emerge until January. Honestly, I would rather never emerge. I would prefer to go to sleep and not wake up. But against my will I keep on living.

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Thanksgiving Weekend Part II

The rest of the holiday weekend was… a lot. Mostly good, but a lot. It is hard to be around a group of people who are happy and carefree when you are not. Most of Friday late afternoon and night was spent in one bar or another. Surrounded by the sounds of conversation and laughter. The noise of people having a good time. I was a bit player. Mostly observing, not really taking part. I tried. I didn’t want to be a downer. I wasn’t out to ruin anyone else’s good time but I just could not fully participate. Even in a completely different context, a situation in which Ariella would never be, I missed her immensely. She is never out of my thoughts and that makes the rest of life feel meaningless. I felt like I was observing from afar. I could see them and they could see me but with significant distance. That’s how I feel most of the time. That I’m in this bubble that filters out any feelings that aren’t related to sadness or anger, leaving me feeling alone and despondent even when among people. It’s not that I don’t necessarily wish to participate, but the shadow of grief surrounding me prevents me from being more than an bystander.

Despite the cold temperature I did enjoy the football game. When watching a sporting event it is okay to be a casual observer. I could focus on the game and not worry about anyone or anything else. But of course thoughts of Ariella continued to flood my mind. Remembering the last time we were at a Maryland v Michigan State sporting event. Remembering football games we went to. Wondering if she would have enjoyed this one, or if it would have been too cold for her? I was looking forward to the change of scenery but there is no escaping her absence.

Getting away was good but by the end of the trip I was really looking forward to being back home. I didn’t want to be “on” anymore. I was tired. So very tired. I’m still tired. Grieving is exhausting. Having to live when it’s the last thing you want to do is exhausting. Just existing in this state. In constant anguish and turmoil, is exhausting. Most nights I do sleep, but I never feel rested. I am mentally, emotionally, and physically drained.

And now here we are in the thick of the holiday season. I flip through the radio stations in my car and hear a snippet of a Christmas song. For some reason Ariella loved Christmas music. She would sing the songs all year long and she battled me in the car to listen to the 24/7 Christmas music station after Thanksgiving. We don’t celebrate Christmas but we did spend it with my mom’s family. Ariella loved decorating their tree and making cookies. The ads, the decorations, the music, the reminders everywhere of happy, festive celebrations. I walk through a store and see all the gifts I would buy her. All the things she would have asked for. One small gift for each night of Chanukah. There is no hiding from the holidays. As much as I try I get hit with one thing after another after another. I used to love the holiday season. Now it just mocks me. Flaunts itself. Dangling in my face what I no longer have.

Words have not been sufficient to express how I’ve been lately. I cannot effectively write how I am feeling. The words I use cannot begin to describe what life is really like. Each day I wake up with a sense of dread, even more now that it’s holiday time. And it’s everything I can do to get through the day.

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Thanksgiving

It is the morning after Thanksgiving and I am sitting in an unfamiliar home, in a different state, but with wonderful friends. David and I were adamant that we did not wish to have a Thanksgiving that remotely resembled previous Thanksgivings, where Ariella’s absence would be glaring. Her absence is always felt, yes, but she is not obviously missing from this tableau since she has never been in this setting, or even with these friends. She would not be expected to be here. And this Thanksgiving was quite different from those in the past and until dinner, it didn’t even feel like a holiday. Had we been at home I would have been cooking all day with the parade and then the dog show on in the background, and Ariella would have taken care to nicely set the table and write the menu on her dry erase board. Yesterday was nothing like that. We traveled and spent time with good friends, eating, drinking and just being together. And it was a relief. But the traveling. There is not much else to do during a more than five hour drive than to think. And imagine all the games we played on road trips with Ariella (the alphabet game, I Spy, License plates). And reminisce. And contemplate “what if?”. And consider what we should be or would be doing rather than what we are doing.

David’s college friends, now a married couple, graciously invited us to spend Thanksgiving with them in Cleveland. And we jumped at the chance to get out of town. They don’t have children and it is almost freeing to be away, with no obligations, doing something completely different. Up until we sat down for dinner, the day felt just like any other day, visiting with good friends. But dinner still just didn’t feel right. The place was different, the people were different, but it was still a Thanksgiving meal. Which should be shared with our daughter. It’s hard to feel thankful when your family has been shattered. But there are some things I am grateful for. I am grateful for good friends like the ones we are currently with. I am grateful for the friends and family that continue to check on us. Especially those that weren’t close friends prior to the tragedy. It’s those that reach out after something horrible happens, even if they are mere acquaintances, that truly care, that truly mean it. Because they don’t have to. They do not feel obligated to. But they choose to. Which is extra special because interacting with a grieving parent is not always easy. It can be awkward and uncomfortable and yet people choose to be there. And there have been quite a few that continue to check in, and just want us to know they are thinking about us. Thank you to everyone who sent messages yesterday. It means a lot.

We are now back in the car for a four hour drive to Michigan where we will meet up with more of David’s college friends and go to the Maryland v. Michigan State football game (I went to Maryland, the others went to Michigan State). It’s going to be cold and rainy, but once again with good friends. I sometimes wish I could just stay in a place where Ariella never was because I could almost pretend that we are just away for a little while, to one day return to normal life. I am not reminded of her with every walk down the hallway, every route we take driving, every store we see. But then again, I take comfort in being around Ariella’s things, being able to go into her room, cuddle with stuffed animals she once cuddled with, touch things she once touched.

I feel like I am not fully participating. I’m watching myself interact, make conversation but I’m actually not really doing too much of that. I’ve been pretty quiet. Silently observing. Not fully taking part. I’m physically here but my mind and my heart are elsewhere. I’ve had moments of laughter, though they are rare. I’m glad I’m here, with David and good friends but I’m also not really here. The change of scenery and company is good. But I also long for the peace of my own home. But what I really want I can’t have and there is not anything that can make that okay. The change in routine, change in location somewhat distracts, but also makes me long for the familiar.

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Unfathomable

I can’t. I can’t. I can’t do this. I can’t live like this. This life. This existence. I don’t want it. It’s horrific. It’s lonely and painful and desolate. It’s numbness and shock and confinement. The pain is overwhelming, it threatens to suffocate me. My arms ache to hold my girl. There are times the pain is so immense that I literally pull my hair, scratch at my skin, anything to try to detract from the anguish. I scream from the top of my lungs. Wail and cry and beg G-d to take my pain away. But nothing comes close to offering any kind of release. It builds up and builds up and builds up but has no place to go.

I don’t write as frequently as I used to. It’s not because I don’t have anything to say. These feelings, this heartache, hasn’t gone anywhere. I have plenty to say. But it’s all the same. Nothing has changed. The darkness still envelopes me. I still cry every day, multiple times a day. I still have visions of driving my car off the side of the JFX or slamming into a tree at full speed. I would never actually follow through but the thoughts plague my mind whenever I am at the wheel of my car. I still count the minutes until I can reasonably go to bed because sleep is the only escape from this nightmare. I can’t be silly, frivolous. I’m no fun anymore. I am in a constant state of sorrow. Joking around, having a good time, making small talk, being carefree, are all foreign to me. I go out, I see people, but there is no true enjoyment. I function. I exercise. I go to work. I cook dinner. I get out of the house. But there is no pleasure in any of it. This is a life sentence. Decades. I have decades of this. It is crushing and soul sucking.

Memories flutter through my mind. Brief movies of our all too short time together. Ariella as a newborn with her full head of dark hair and her daddy’s mouth. Crying whenever she was put down. Ariella as a toddler, wearing my boots and carrying my purse through the house. Visiting Ariella in school during American Education Week. Seeing her in a world that was usually her own. One that we did not get to witness very often. She had her own life in school. A life with her teachers and friends that we didn’t know much about. Playing soccer, doing gymnastics, and shining on stage when she started to dance. So many memories. So many. But not nearly enough. There will never be enough. When those memories dance through my thoughts I find myself in complete disbelief. This is my life now. I am living in a constant state of disbelief. I cannot believe that that little girl flooding my mind is no longer here. I cannot fathom that our lives turned out this way. I always felt so very lucky. Life came easily. Bad things, truly bad things, didn’t happen to us. Even when Ariella was diagnosed I thought nothing worse could happen. We would have a horrible year but in the end she would be just fine. Because nothing bad happens to us. And now I can’t imagine anything working in my favor again. And yet I still can’t believe it. When I’m cooking dinner I can’t believe she’s not in the next room doing her homework. When I’m getting ready for bad I can’t believe that my night won’t end without reading with Ariella. When I’m driving home from work I can’t believe that I don’t have to stop on the way home to pick her up from school. There is so much unbelievable about this and yet it happened. It’s real. A life sentence, as I mentioned, when I would much rather be sentenced to death.

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My Story

When thinking of the story of my life I never thought this was how it would turn out. Sad and desolate, filled with heartache and anguish. Every sad story needs a hero but that is certainly not me. I am no hero and nor do I wish to be one. I can barely save myself much less help others. I am angry that I couldn’t be the hero. That I couldn’t save my daughter. In a story about families the parents are supposed to be the heroes. They are supposed to save their children, protect them from harm. But no heroic action on my part could save Ariella. I could not when it was most necessary, fulfill my role as a mother.

My daughter is the real hero. She is light, she is grace, she is my savior. But she is no longer here. She is the hero that paid the ultimate sacrifice for the battle that she did not choose. It chose her. Her story defines my story, from the day she was born. I was no longer just a wife, just an occupational therapist, just whatever. I was a mom. My most important and meaningful role. My life and story was forever changed where I went from the main character to a supporting role. My daughter had, and still has, the leading role in the story of my life. Now more than ever since I feel her absence everywhere.

This story is no fairytale. It is a horror story with twists and turns and suspense. The nightmare began when Ariella was diagnosed and since that time there have been many plot twists with unexpected hospital stays, achieving remission, relapsing, setbacks, and progress. We never knew where the story would take us, what scans would show, what the next steps were, how it would end. I wish I could go back to not knowing how it would end. I wish it was one of those choose your adventure stories because any other ending has to be better than the ending we got.

But unfortunately for me my story did not end there. My life did; my meaning, my purpose, but physically, my story goes on. Collateral damage left in the wake of destruction. I am not the hero in this story. I am not doing anything heroic. I am not inspiring, the epitome of strength, someone to look up to. I breathe because it is an involuntary function. My heart beats, also against my will.

My story took a dark turn, led me into a black, twisty, labyrinth with no way out. The true heroes of my story are present. The ones who have been there, who are not scared, who don’t turn away from the demons haunting me. They try to lead me through the paths, to the light but no matter which direction I turn, I keep hitting dead ends. Sometimes I feel like I am making progress, finding my way through, the path ahead looks clear but then out of nowhere, a wall. A dead end. This wall, this barrier, doesn’t just stop me from moving forward, but actually pushes me back. I feel trapped, lost, confused, have no idea which way the path will take me. But after some time with my heroes present I pick myself up and try a new path. A new direction towards survival. And so I slowly start again. One foot in front of the other, slogging through the mud. Breath by breath, heartbeat by heartbeat. But then another wall, another obstacle, something else keeping me trapped in this maze. It is maddening. It is infuriating. And so incredibly frustrating. I feel so lost, so confused. Turned upside-down and inside-out. What’s up is down and what’s left is right. I don’t know which way to turn. And when I’m sure about the direction I choose, it turns out to be wrong. I’m beginning to think there is no right path. That there is no way out of this web. That I am doomed to spin in circles with no relief, no way back into the light.

I used to think we wrote our own stories. That our future was in our own hands. In a cruel twist of fate I learned that we really have no control over our destiny. How naive I was. It remains to be seen how my story continues and ultimately ends. I just wish it was sooner rather than later.