Author: Erica

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Kindness

Running through my neighborhood I run past bikes strewn across lawns, kids running through sprinklers, scooters left haphazardly on the sidewalks, pictures drawn from chalk. A family packing up the car for vacation, two parents and two children. All evidence of the happy lives going on behind the front doors. But is it really?

You never know what’s going on behind those closed doors. Who is using those bikes? Should there be one more? Is the picture drawn by a child who is sick and cannot join in the more physical activities? One parent is supervising. Is the other parent inside, or is it something more sinister? What we see is just a tiny glimpse of someone’s life and we shouldn’t even begin to guess at the reality. What do people think when they see me? I probably look fine to others when I am out running. Maybe they think “good for her, she’s taking care of herself by running. She cares about her health.” Or when we are out walking our dog, talking with each other. Do they think “what a nice, happy couple walking their dog and enjoying their time together?” We go on with our daily routines which makes it appear that we are typical people just going about our lives. Rarely can others see what’s below the surface unless we show them. At our house there are no toys or bikes outside but a stranger happening past wouldn’t think anything of it. They might see our dog and cat looking out the door and think that a home with pets is a happy home. There is no evidence that I am broken. No evidence that behind the walls of our well taken care of home is unfettered grief and heartbreak. Even in public, though I feel like a shell of my former self, others may look at me and think I look unhappy but they certainly would not see the extent of my anguish (unless I am crying, which does happen quite a bit).

Even when Ariella was in treatment a bystander observing our family wouldn’t think anything was wrong (unless Ariella was showing off her bald head). We had fun, Ariella played outside, we looked just like any other happy family. We wore good masks. The worry and fear wasn’t evident. We looked carefree, like we had it all, when in reality we were facing our worst nightmare.

The point of this is that you never know what someone is dealing with. My temper is short these days. I rarely smile, and have no desire to make small talk. Strangers may take that as rudeness. But I can’t help it. But when someone shows kindness, by a compliment, or just with pleasant greeting, etc., it can offer a little brightness to someone who just may need it.

I have experienced a lot of kindness from strangers recently, even when I feel like I don’t deserve it. Here is an example. Well this man is not a complete stranger. He lives in our neighborhood and (I’m saying this in a joking way) accidentally traumatized Ariella one Halloween. I think it was her fourth Halloween so she would have just turned three a few weeks prior. She was a pirate. When we got to his house for trick or treating he opened the door but remained hidden by the wall. After a few seconds he jumped out wearing a gorilla mask and loudly roared. Well that scared the shit out of Ariella. She jumped, screamed, cried, and ran away, knocking off her bandana. For the longest time after that she wouldn’t walk past the house and would frequently talk about the “Gorilla House”. She even remembered that her bandana came off. She eventually outgrew her fear of the house and even trick or treated there, but she never forgot that one night.

I’m telling this story because we never knew this man personally. Trick or treating was our only encounter with him during all the 12 years we’ve lived here. And then Ariella died and he came to the Shiva house (I don’t know if he was at the funeral). I’m not sure how he knew our situation but I think he knows David’s mom (everyone knows David’s mom so it’s a good bet that’s the connection, and I’m pretty sure that’s what David told me). It took a minute before I realized who he was but then I joked with him that he was the one that traumatized Ariella years before. I hadn’t seen him since the Shiva but the other day when I was walking the dog he was sitting outside on his deck and saw me walking by. He made it a point to check in with me and sincerely said I could let him know if there was anything he could do. I didn’t even see him at first, he called my name to get my attention. He could have ignored me. Who wants to talk to a grieving mother you barely know? I truly was touched.

The number of people that followed and continue to follow Ariella’s story astounds me. Many, many strangers invested their thoughts and prayers and energy into Ariella. Following a child with cancer is no easy feat. While at times it can be quite uplifting it is often emotionally draining. Strangers get to know those kids, care about those kids, and too often the children do not survive. And yet these people we have never met followed her to her last day and continue to follow her legacy through Ari’s Bears. Strangers sent Ariella cards and gifts when she was in the hospital. They have sent us bears and donated to Ari’s Bears. They comment here, let me know I am not alone. Many who live local to me, whom I have never met in person, have offered real, tangible help (for example grocery shopping for us). In a world where it’s so easy to focus on the bad, we need to remember there are truly, kind people.

Acquaintances and strangers that go the extra mile when clearly they do not have to helps get me through. They remind me there is good in the world, that people are generally caring, that there is some lightness in the dark. We would expect this from our family and close friends and we have mostly gotten it (though for the record, a comment on a facebook post here and there does not equal support) but ever since Ariella was diagnosed I was surprised and pleased at support we received from people we had never met. Many of them have become our family. Especially the cancer families. The pediatric cancer world is supportive by nature. Though the families are each fighting their own horrific battles they still take their time and energy to support other families. And then when the unfathomable happens the bereaved parents community reaches out. Again, these parents are in a never ending state of grief and yet they want to support others who are going through the same thing. The pediatric cancer and bereaved parents worlds are the most supportive, caring clubs that we never wanted to join.

So again, you never know what someone else is dealing with. You don’t know what’s behind that smile, behind those doors, beyond the surface. Everyone is going through something. No one’s life is perfect and a little bit of kindness goes a hell of a long way. An act of kindness may make a huge impact on someone, even if you don’t see it right away. Even if someone is not kind to you, be the person who will show them some kindness. They just might be the ones who need it the most.

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Iced Chai Latte

I can’t. I just can’t anymore. I just wanted a fucking iced chai latte and that was too hard. Trying not to cry all day long but every fucking thing is a reminder. Drove someone to an appointment at the hospital where Ariella was born. The best day of my life. Never in a million years would I have imagined that less than 12 years from that day she would no longer be here. She was perfect and healthy at birth, even though she was born by c-section. She was rarely sick and I couldn’t imagine that I would only get to be a mom for 11 1/2 years. And don’t tell me I will always be her mom. It’s not the fucking same. I don’t get to see her grow up. I don’t get to teach her to drive. I don’t get to hear about boys and take her shopping for a prom dress. I don’t get to send her off to college and help her plan a wedding. I don’t get to brush her hair and tuck her in at night. I don’t get to hug and kiss her. I don’t get to cook her dinner, pack her lunches, share sushi with her, watch her dance. I don’t get to read to her, read the stories she wrote, receive the cards she always made. I don’t get to help her with her homework, take her to musicals, take her on vacation. I don’t get to see how she would have turned out. I don’t get to see the amazing adult she would have become. I don’t get to continue the amazing mother-daughter relationship we had. I don’t get to have grandchildren. I don’t get to just be with her, every day. I lost everything. I am missing out on everything. And I feel guilty about it because I should be sad for her, for her life being cut so short but I am sad for me, for all I’ve lost and all I will never have. And yet I am wasting this life I have. Maybe I should try to enjoy life, go on living because she can’t. It seems wrong to not “live” when all she wanted to do was live. But it also seems wrong to live when she can’t. When she deserved it. Why should I get to live when she can’t?

The second appointment of the day was at an imaging center. The same center where Ariella had her follow up x-rays. I will never forget the anxiety walking into that place. My heart pounding, adrenaline pumping. Literally shaking. And that feeling would linger until we got the results. It was an x-ray done at this place that showed her relapse. While waiting there I tried to distract myself. I read and watched a show on my phone. But my thoughts always went back to all the times I was there with Ariella. And the tears would start.

It had been an especially rough few days. I just wanted my iced chai before heading home after a long day. In the parking lot. A Baltimore Symphony Orchestra bumper sticker. Reminded me of watching the BSO perform Peter and the Wolf at Hopkins when Ariella was there for her BMT. She was feeling so good. I just don’t understand what fucking happened. And I just want to go back and change the variable that made everything go to shit. Remembering the good times, remembering the bad, makes no difference. It all leads to my child dying. Sometimes remembering the good is harder because it only reminds me that this never should have happened. Cancer didn’t kill her. It was a perfect fucking storm of everything that could go wrong with the treatment. So the good times, even in the hospital because there were some, just serve to show how naive our optimism was. How we should never have done the transplant. Because that transplant took the life of the girl in the hospital who was just days prior dancing in the hallways, silly stringing her teacher in her hospital room and pranking her nurse with a scary clown mask. She wasn’t sick. She didn’t look sick. She didn’t act sick. But still she died. It’s not fucking fair.

All of that from a bumper sticker. But I wanted my chai and after navigating probably the world’s most awful parking lot I couldn’t leave empty handed. So I composed myself and went in to get my drink . But right there in front of me in line, a girl about Ariella’s age, with her mother. They were joking with each other. Laughing. Ariella could always make me laugh. Even when I was angry with her. Sometimes I had to hide my laughing because she did or said something she shouldn’t have that I found funny. Sometimes her tantrums (and yes, even at 11 she had tantrums, she wasn’t perfect) were so over the top I couldn’t help but laugh, even though that set her off even more. But she was funny and silly. She made weird and funny faces. A few days after she had her trach placed I was having her make funny faces with me. She made up songs that made no sense and if you told her she was weird she said “thank you.” I miss laughing with her. I miss the sound of her laughter. It was contagious. I have laughed since Ariella died but it doesn’t sound the same to me and it doesn’t feel the same. Many times I’m laughing at something I wish I could share with Ariella because she would also find it funny. My laughter feels hollow now. It’s tinged with sadness. It’s not as loud, not as strong, fades as quickly as it started.

I made it through the line though my eyes were tearing up. While waiting for my drink I decided to check my phone. I wanted to check in on the writing group I’m doing which is on Facebook. I opened the app and had some notifications and I made the mistake of looking at them. One was a beautiful post by the mom of another girl with Ewing’s sharing Ariella’s page and website. I loved that she shared it but I wasn’t expecting to see it and it made me cry. Another had shared a picture of Ariella and her cousins 3 years ago, before it all went to hell. And at the top of my newsfeed was a post with pictures of the Dancers Against Cancers hope stories who are now angels. Just one year ago we were in LA with Dancers Against Cancer (fabulous organization by the way, check them out) for the Industry Dance Awards. Ariella met and bonded with other hope stories and was reunited with friends met that previous April. I never dreamed just a year later she would be there again, but this time in a remembrance video.

I make it home, finally. To this.

Just one more in your face reminder. Fuck you Amazon. Kind of ironic though because Amazon has been my lifesaver. If I need something but am not up for going somewhere, I don’t have to. And you can see from this post why I don’t want to go anywhere.

I just can’t do it. I can’t go on without her. We had so many plans. So many things we wanted to do. It’s not fair that I get to go on living when she doesn’t. I don’t want to go on living. Why couldn’t it have been me? She had her whole life to live. She had so much good to do in the world. She was only just getting started.

There is nothing good that will come from this. There is no lesson to be learned from my grief. Anything I may have needed to learn or do did not require my child to die. At the end of each day I feel like “Yay, I made it.” But for what? What am I making it for? I just have to wake up and do it again. Day after day after day. Just going through the motions. Not enjoying it. Suffering from pain and heartache most of the day. Who wants to live a life in pain and yearning for the one person you can’t have? It just seems so daunting, so hopeless. I don’t know how to continue.

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Friends

Yesterday afternoon I went back to Sinai Hospital to deliver more bears for Ari’s Bears. This time was so much harder than the first time I went back. This time I couldn’t tell her story to the parents without breaking down. This time I had Ariella’s friends with me, mostly school friends, and her absence was obvious. There was no one playing basketball or challenging me to Foosball. It was so quiet in there for having seven preteen girls and one preteen boy. That room was never quiet when Ariella was in there.

I love Ariella’s friends. They welcomed her into a new school with open arms and treated her like a normal kid. They were supportive of her and it was evident how much they liked her. She was the new kid and yet never felt like one. I am forever grateful to her friends for being so kind and loving and welcoming. She truly loved her school and went even when she wasn’t feeling her best. I am also so pleased that her friends are also passionate about Ari’s Bears. They too want to continue her legacy.

But being with her friends at the hospital was so very hard (any of her friends reading this, you guys were incredible and you will always be part of our lives and part of Ari’s Bears, it’s just hard for me to do it without her). Watching them interact, hearing their conversation, and just knowing a member of their crew was missing. Ariella loved being with her friends. She thrived on the interaction. I miss all of it so much. I miss hearing about her friends, having her friends sleepover, watching her become more independent, watching her come into her own. I have a lifetime of seeing girls her age grow up, surpass her, do all the things she will never get to do and that I will no longer get to do with her. As parents we take such joy in our kids. We take pleasure in watching them grow, making their way in the world. We live through them. Our jobs are to raise them into successful, independent adults. Watching the other kids do it just isn’t good enough. Watching other kids do it is so fucking hard. I want her back. I want my baby back. I don’t want to navigate this world without her. I need her to nurture, to love, to take care of.

This morning I was at an appointment with someone at a radiation oncology office. Figured it would be fine, I was just hanging in the waiting room. But while waiting I heard two patients ring the end of treatment bell. The sounds of celebration filled the waiting room. Ariella rang the end of treatment bell twice. First after she finished her first line treatment and second after she finished radiation as part of her relapse treatment. I was so happy when she finished that radiation treatment. For one thing, she was feeling pretty lousy from the radiation so I was hopeful that she would start feeling better soon. But mostly was thrilled to be finished with that phase of treatment and hopefully move onto the next, the bone marrow transplant. Radiation worked. Her tumors were dead. Nothing lit up on the PET scan. It was time to kill those cancer cells for good with new bone marrow. So much hope. Hearing the bells brought me back to those two times when we had hope, a positive outlook. We thought things would be okay. Only to have our hearts ripped out of our chests with nothing left to live for.

I don’t want to do this anymore. I don’t want to cry everyday, I don’t want to live with a gaping hole in my chest, I don’t want to watch or hear about the other kids getting to do all the things Ariella will not. I can’t go anywhere without the threat of a trigger. There is always a reminder, something that makes me think of her. In reality I am always thinking about Ariella. I am always aware of her absence. But some things just slap me in the face. Make it painfully obvious that she’s not there. Makes me miss her even more if that’s possible.

I think my friendships are ultimately going to suffer. Especially friendships made because of Ariella. Not because of them, but because of me. It’s too painful and I fear I may have to distance myself. But then I won’t have anyone outside of family. I don’t know how to do this life. This life is unrecognizable. I am unrecognizable. I am not sure how to go on from here.

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A Letter from Grief

Dear Erica,

You thought you knew me.  We were acquaintances. I have made several appearances throughout your life.  I was disruptive but not destructive. When your friend died in high school I hung around a bit, an almost comforting soul reminding you of the memories you cherished with your friend.  I was not the powerful force to come later.  

Even when your father died I had yet to be a destroyer.  I was a dark shadow dampening your spirit, darkening the days.  Initially I was everywhere, invading your every thought, creeping into your brain with my long, thin fingers.  But I did not have a powerful hold over you. After some time you grew stronger than me. You were able to push me aside and allow other thoughts in.  

But now, Erica, I am a force to be reckoned with.  I am no longer this frail figure hiding in corners, easy to overcome.  I am a monster. A huge, burly creature that will crush you with the weight of me.  I will pound you, shake you, batter you until you are hurting in every bone, aching in every inch of your body.  I am a mist, a fog that will seep inside your mind, spreading into every cell, until you will be so consumed that you will be unable to complete even the most simple of tasks.  No longer a mere acquaintance, I am your constant companion, never leaving your side even for a moment. I am there when you shower, there when you exercise, there when you are with your friends, there when you are trying to avoid me.  You can’t avoid me. Even when you think you can I am hiding under the bed, in a corner, behind the trees, ready to leap out at you when you least expect it.  

But I am not the bad guy.  You need me. Because the most important person in your life died.  The person who completed you, who made you whole, is dead. You cannot ignore that.  I will not let you ignore that. I am here for you. I am here to make you feel, to make you face your loss.  Because only once you face me, every hideous inch of me, can you learn to live with me. I will never go away.  I have picked you up, shaken you, and turned you upside down. I have dropped a bomb on your world, causing an explosion to reach the ends of the Earth.  That cannot be fixed. I cannot be defeated. However one day you just may be stronger than me again. You may be able to push me away sometimes. I may not always be able to flood your brain.  You may even find periods of happiness though they will be tainted with the shadow of me. And I will always return. You may not know when or how but I will be there, for the rest of your life. Get used to me.  Get used to my heavy presence, my oppressive soul because I will be weighing you down, causing you pain and shattering your world over and over again. You will never rid yourself of me but you will get used to me.  In fact, you will hold on to me.

Something else you should know.  Others will think you need to let me go. They will think you are stuck on me, that I am not healthy for you, that I am holding you back from living.  As I said, I am not the bad guy. I am here for you as long as you need me to be. But I cannot make others understand me. I cannot make them understand that though I am ugly and scary and invasive I am a necessary evil and not something to just “get over.”  I cannot make the others understand until I am the same companion for them. The only way to understand me is to know me. You and I have a complicated relationship. You may hate me and you may cling to me. You never know when I might appear and that makes you angry with me.  But you need me and will know me forever.

Yours to hold forever and always,

Grief

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The Retreat

This weekend David and I went to a retreat in Tucson, AZ.  It was for bereaved parents whose children died from cancer.  There is a lot to process from this weekend, but it was good.  We flew across the country to a vastly different landscape and though of course the heavy weight of our grief followed us there, while there it felt different somehow.  I didn’t feel like I was in my real life.  Real life felt far away.  There was a moment when I left dinner to grab a sweatshirt. It was so dark and quiet and peaceful when I was walking to and from the room. I just wanted to soak in that peace and beauty, knowing it wasn’t going to last. I wish I could have stayed there.  Pretend like my life now was a horrible nightmare.  But that would be pretending my past life didn’t exist, and I could never wish Ariella away. 

When David and I were first invited to this retreat we accepted almost immediately.  We were invited within the first month of Ariella’s death so I had no inkling as to how I would be feeling by the time the retreat rolled around.  As the weekend inched closer, I started becoming a bit hesitant.  Not to the point that I wanted to cancel but I was certainly nervous about what was in store for us.  Ariella’s death is still so raw.  There has been no healing, no scabbing over of the wound.  The cuts are still fresh and I don’t know how much more I can bleed from my wounds and still breathe.  I didn’t know if I would have the strength to share my grief with a room full of strangers.  And I didn’t know if I would have the strength to share in their grief either.  But what I realized almost immediately was that these families were not strangers.  It didn’t matter that we had not yet met. There was an instant connection.  Our hearts knew each other.  They knew me in a way no one else can.  This weekend bonds were forged, connections made, and a new family was formed.

David and I left at the crack of dawn Friday, our hearts heavy, leaden with sadness, but anticipating the weekend to come. Two flights, a couple time changes, an emotional breakdown in the Atlanta airport, and 9 hours later we arrived at a ranch in the hot, dusty, dry, Arizona desert with bugs on steroids, an abundance of massive cacti, and breathtaking views. We had time to explore before the retreat officially began and took in this scenery that was so unfamiliar to us. I wrote previously about the desolation and loneliness of the desert but there is so much beauty in the desert as well.

There were 15 families at this retreat. Fifteen dead children. Fifteen families forever changed. More than 15 siblings whose hearts are just as broken. Some, like us, were still fresh to this new life while others were further from their loss. But it made no difference. We all cried just as much, the pain was still evident and raw and present no matter how far along the path. We cried for ourselves and we cried for each other. We felt each others’ pain so deeply, in a way that those who have not been there cannot. But while I was worried it would be too much to share in the other pain, it actually made me feel lighter somehow. Not so weighed down underneath the burden. Because others were there to help me carry my grief, to lift it from my shoulders, to allow me to straighten up, lift my head and talk about Ariella while they really listened. We started to get to know each other. We talked about our children but not always. We are able to talk about other things as well. Where we live, what we like to do, just general life. But we never for a second forgot why we were there, why we met, why we felt so connected. Hugs were freely given, pictures were shared, and stories were told.

We decorated candles for our children and shared our messages that we wrote in a candle lighting ceremony. Most heartbreaking were the messages the children wrote for their siblings who had died. Some had never met their brother or sister while others just said “I want you back”. But deep down the messages were all the same. A deep love for the children that will never fade and persistent pain and heartache. A pervasive yearning for that child and knowing that something will always be missing. That no matter what the families will no longer ever be complete. The ceremony was tragic and beautiful.

Saturday was an emotional roller coaster. We talked about our children. Not so much about how they died, but about how they lived. Even the youngest of the children left their marks on the world. They all had cancer but the circumstances of their deaths were different. Some died from the cancer. Others, like Ariella, from the treatment. And others still from diagnostic procedures where the death of their child was the last thing on the parents’ minds at that time. All tragic. And no matter the official cause we all feel anger and guilt. But no one tried to talk us out of those feelings. No one told us to move on, or that time heals all wounds, or any other trite platitude. We could share anything without judgement, and without others trying to fix us and make it better. Because we all know that we don’t need fixing. Grief is not an illness. We are not sick. But we also all felt blessed to have been the parents of our children that died, even with all the pain we feel now. And it was wonderful to be in a room where everyone understands.

The mood was not always heavy and somber. Saturday evening we gathered for some drinks and then we all had dinner together (all our meals were together). Conversation varied and did not center around our children (though inevitably the talk would always circle back to our kids) and there were definitely lighthearted moments with smiles and laughter. But you could see it in everyone’s faces. The sadness behind the smiles. The smiles that don’t quite reach the eyes. The feeling of “how can I be laughing when my child is dead?” It was a comfort to have my feelings reflected in the faces of others. Grief is a very lonely road and while it can never truly be shared it is a relief to be with others who understand.

The last morning we (except for David-he rode a mountain bike) went on horseback through twisting, hilly, trails to an outdoor breakfast. Despite being bit by one of the horses in the beginning and then having my horse take off because he was knocked into by another horse I really enjoyed the ride. Though I was a bit (extremely) nervous going downhill I mostly relaxed during the ride. Just me and the horse and the beautiful scenery around me. I was able to really quiet my mind and just take in my surroundings. I wish I wasn’t there. I wish none of us were there because of the 15 reasons we were there. But I was grateful to be there. And it was the quiet morning on the horse when I really reflected on the weekend (well other than when we were going downhill and I felt like I was hanging on for dear life). And I started to experience another sense of loss. Because we would soon be leaving our people. These people we already knew before we met. These people who are now family.

The weekend wrapped up with a lovely remembrance ceremony. Pictures of the children were on display. Despite the horrible disease they were facing, their light and joy shone through in their photos. Such vibrancy, such zest, so much potential. A video was shown with the families describing their children in five words. How do you sum up a child in only five words? Those five words cannot begin to describe those children. We heard about each others’ children all weekend and the number of words it would take to capture them would fill a book. And there should be even more. As they were supposed to grow and change there should be more and more words to describe them. Their work here was not done. Their lives were way too short. Fifteen beautiful children who never got the chance to really live.

My words here cannot sufficiently describe this weekend and the emotional impact it had.  This weekend was hard.  At times it was excruciating. There were tears.  So many tears.  Some times quietly streaming down the cheeks and other times ugly, loud and relentless. But there were also smiles and even some laughter. Instant connections were made.  Many hugs were given.  We all understood each other.  It was a safe place. We felt our kids there. David received a blue iguana that he asked Ariella for as a sign. There were multiple rainbows the last day. The siblings bonded very quickly with each other. It was a very meaningful weekend. Humans desire connection. We need it. When your child dies it seems impossible to connect with those that don’t really understand. And we don’t want others to really understand. We wouldn’t wish this on anybody. This retreat gave us the opportunity to make uncomplicated connections. No explanation needed. That is what I have been craving, needing. I was worried it was too soon. But it was the place I needed to be.

Returning home was tough. It hasn’t felt like home since Ariella died. This weekend didn’t feel like my real life and I did not want to return to the quiet, empty, house yet again. I woke up feeling heavy again, bowed down with the weight of grief. I know that grief is here to stay. But that’s okay. Because grief is not the bad guy. I need grief. Because the most important person in my life died. The person who completed me, who made me whole, is dead. I will never learn to live with grief if I don’t face it head on. This weekend was the start of me realizing that one day, maybe, I will be stronger than grief. That I will be able to sometimes push it away, though knowing it will always return.

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The Desert

Another day that you get two posts from me. I wrote this for my group while on the first leg of a flight heading to a retreat. We had a layover in Atlanta and the tears that were threatening to leak out the entire today finally burst out of me while walking through the airport. I hate this.

The forest was my landscape, where everything was lush and green and spectacular.  I was surrounded by beauty. Life was in technicolor, vibrant and bright and exciting.  I couldn’t wait to see what was over the next hill, behind the next tree, hiding in the grass.  Even after D-day, diagnosis day, the forest sustained me. It fed me, nourished me. Was something to look forward to after the desert of the hospital.  Reminded me of the beauty to which we would one day return. The promise of the forest, of life, of renewal, kept me going. 

But then. Then everything changed.  The promise of the forest was gone. Back to the desert I went.  But this time it was even more barren, more arid, with no more promise of the rejuvenation of the forest.

The world around me is now brown, dull, devoid of color, smells and sounds.  The desert surrounds me like a bubble. Life goes on around me with the optimistic sounds and colors of the forest.  The birds chirping, the frogs croaking, the dew glistening on the leaves of the trees. Animals scampering about. A world of hope and beauty and adventure.  But here in the desert all is quiet. No signs of life. Nothing to do, no reason or purpose. The sand seeps into my every pore making me so uncomfortable in my own skin. It begins to pile up around me, threatening to bury me. People can see me in the desert bubble.  They see me suffering, panicking, in pain. They want to help. They try so hard to help. But they can’t break through the barrier. Even when seemingly surrounded by people it is lonely and oppressive inside this bubble. I am alone. 

I can see outside of this bubble.  I can clearly see everything I no longer have.  Intact families. Children. Motivation. Joy. Excitement.  Satisfaction. Contentment. Relief. Optimism. Something to look forward to.  I desperately want to pull it inside this bubble with me but the bubble is impenetrable.  I helplessly look out while the world goes on living, moving on. Wanting to join them but unable to.  

The desert is suffocating.  I can’t breathe in here. I start to cry and my anxiety kicks in. I scream and yell but no one hears me.  I want out. I am pounding on the walls trying to escape. I don’t know how to live here. I don’t like it here.  My body and soul weren’t made for this. I want the forest back. The beauty, the promise of new life. I want to go back to the way things were.  But I know even if I return, if I manage to tunnel my way through this dark hell hole, the forest will never look or feel the same to me again. All the hope and joy has been sucked out of me.  Instead of experiencing the beauty I will be frightened and sad. Wondering what is lurking in the dark corners where the sun doesn’t reach. Scared of the animals baring their teeth at me, ready to attack.  The forest is now filled with monsters that I can’t escape. Pouncing when I least expect it. No place is safe anymore, no matter the landscape.  

As I write this I am literally changing my landscape.  I am on a plane traveling from the hot and humid Maryland to the hot and dry Arizona.  Heading to a retreat for bereaved parents. I had always thought that there was something to be said about a change of scenery to help with a new outlook.  But now I realize it’s just one’s perception. You can be in the most beautiful place in the world and still feel hopeless and suffocated. It’s impossible to appreciate the beauty when you feel dead inside.  I haven’t yet learned to live in this new landscape. It is so different than what I am used to. It’s a place I would never voluntarily go. And yet I’m sentenced here for the rest of my life. I guess one day I’ll figure it out, even if it is just surviving minute by minute, but the world will forever look different to me.  The beauty is no longer in the simple things. Just one more thing I lost along with the death of my daughter.

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A Letter to My Daughter

Dear Ariella,

It’s been three months since you left this world. Three months filled with anguish, heartache and despair. Three months since I saw your beautiful face and felt your skin against mine. Three months of quiet, of emptiness, of looking for signs everywhere. Three months of trying to get through the days without you. I’m not sure why I feel the need to mark the passage of each month but it seems significant to me somehow. I’m three months further away from you but I am also three months closer to you.

If you look around our house, most things look the same though there are some changes. One day, shortly after you died I was sitting in the dining room and looked over to your play area. All I could see were all your unfinished projects and craft supplies just waiting to be used. All the evidence that a preteen girl lived here. I couldn’t stand looking at it. Looking at the games and crafts and puzzles that would never be used. I immediately went through the shelves, keeping anything meaningful, tossing anything opened, and donating anything brand new. It looks different back there now. Organized, clean. I miss your clutter, your mess so very much.

Your room, your beautiful new room that you never got to see, that we were going to surprise you with after you came home from the hospital still looks lived in. It was actually neat and organized because we had it painted and then I organized your shelves and all your make up. I was so proud of it, I couldn’t wait for you to see it. Your closet, though was still a disaster. I hadn’t gotten around to straightening that up. So again, one day I was in your room and I couldn’t stand seeing all the clothes you would never wear again so I cleared out your closet and drawers. I kept your t-shirts, had them made into a blanket and I kept your costume from “Brave” and your solo because they both meant so much to you and to us. What a gift it was that you were able to perform prior to going into the hospital. Who knew that would have been the last time? I kept other little things that were important to you as well but I did part with quite a bit. Most of it wasn’t meaningful, or sentimental and it hurt too much to have them there, unworn, unused. Your bed is made with your special dolls and stuffed animals, your iPad and wallet are sitting on your desk, the books you didn’t get to finish are on your end table, and there are some trinkets on your shelves. Things that you picked out to decorate your new room. It looks like any minute a young girl will enter and hang out in there. But only Sherman uses your room now. I always wonder if he senses you there. He didn’t know you but he spends a lot of time in your room and leaves his toys there.

There are some things I just can’t part with or put away. Your Love Your Melon beanies. Initially I thought I would give them to your friends but I just can’t. They were so you. You always had a beanie on. You turned your friends onto them. You rocked those beanies like no one else. I held onto your Uggs and black Converse. You were no fashionista but you loved those boots and shoes and they certainly suited your style. I love the image of you in the pink fancy Bat Mitzvah dress with your black Converse. Only you kiddo. You definitely had your own style and you never worried what anyone else thought. The purple cup you won playing Bingo is sitting by our sink, never used. You were looking forward to drinking your first big glass of water out of that cup. You never got the chance. Your dance jacket and book bag are still hanging by the front door. Your Hall of Fame award/invite to the National dance team is still hanging on our fridge. You were so proud to win that. The first year you got to perform a solo and you did so well, earning several awards. How you were hoping to be able to go to the Nationals this past June. I thought it was a long shot but a slight chance. Who could have known? We were so optimistic that you would be out of the hospital in 6 weeks and ready to start living life again soon after. This outcome never crossed our minds.

You’re still here, present in every way but the way that we want. Your artwork is still hanging on the walls, your picture is everywhere, and all the pottery you painted is still on display. You always will be a part of this home, a part of our family and our house will always reflect that. We will never erase you from our home. Sometimes it’s painful to see the pictures of you but mostly they bring me comfort. Evidence that you were happy, that you had a mostly good life, that you existed. You forever changed our lives when you were born and forever changed them again when you died.

I am a better person for having been your mom. You taught me so much about strength, about courage, about resiliency. You taught me about what really matters in life; kindness, generosity, family, compassion. Of course I knew that but you exhibited those traits even when it seemed impossible. Things we take for granted were no longer taken for granted after you were diagnosed. And so much of that was because of you. Because of how you responded, how you lived your life in the face of fighting a horrible disease. You cared more about others than yourself and wanted to help anyone you could. You didn’t focus on what cancer was taking from you or doing to you. You focused on how to live your best life given horrible circumstances. You continued to go to the dance studio. You had sleepovers with your friends. You went to school even during chemo weeks. You did not let cancer stop you from living. You were the epitome of strength and are my inspiration for getting out of bed each day, trying to go on living even when I want nothing more than to go to sleep and never wake up.

Words cannot begin to describe how much I miss you or the deep longing I have for you. My arms ache to hold you, to wrap you in a big bear hug. My heart aches to hear you say “I love you, Mommy”. I would move heaven and earth, take a bullet, do anything in the world to have you back here with me. Forever without you is such a long time. It’s a life sentence. One that none of us deserved. Trapped in this prison of anguish and despair. You completed our family and nothing can fill that hole that was ripped out of my chest when you died. You are irreplaceable. You made this world a better place and the world is not as bright without you in it. Your work here was not done. You had so much more love to give. So much compassion and generosity and kindness to share. And of course your work with Ari’s Bears had only just begun. I am so angry that you did not get to live to reach your full potential. You had your whole life ahead of you. You had plans. You will never got to go to college and be on the college dance team. You will never get to achieve your dream of being a nurse (or physical therapist). You will never get to get married and have the 5 children you wanted. You will never get to get the tattoos you wanted or carry out the pranks you had planned. And you will never get to see your legacy, Ari’s Bears grow the way you wanted it to. It pains me that you will never get to see the true impact of your foundation, your passion, the amazing organization that you started. The truth is, that after you had been diagnosed anytime I heard you talk about what you wanted to be or do when you grew up I cringed. I was so scared that you would not live to realize your dreams.

I am so sorry for everything you endured. All the pain, sickness, fear, and anxiety. All the times you were poked and prodded, all the surgeries you suffered through, all of the procedures and scans and toxic treatments. We put you through that because we were so sure you would survive this, that it would be a shitty year (or two when you relapsed) but what’s a year or two when compared to being able to live a full life? I remember how disappointed you were when you learned you would have to miss yet another competition season. But we reminded you that you were missing one season to be able to have many more. I am so sorry that we were wrong about that. I am so sorry that the treatment we pursued, that we were so optimistic about killed you. I am so sorry that I couldn’t physically comfort you during your time in the ICU or alleviate your fears. I am so sorry that you spent the last three months of your life in the hospital, away from your cat and your friends and your beautiful new room with the comfort of your own bed. I am so sorry I couldn’t protect you and save you, like a mother is supposed to do. I’m sorry, I’m sorry, I’m sorry.

I will never stop loving you. You will always be present in my life. If I was given a do-over, reliving my life but without you, without ever knowing you but without the pain of losing you, I wouldn’t take it. Because as soul crushing as this pain is, it would be even worse to never have known you, to never have been your mom. You gave me my most important, my most meaningful role. You loved and received love unconditionally. You were always unapologetically yourself and you pushed me out of my comfort zones. You were the complete opposite of me; outgoing, a leader among friends, social, and I followed your lead. I loved seeing the world through your eyes and I continue to try to do so, though it’s so incredibly difficult. I know that you would focus on the good, would try to be happy, would try to find joy and that you would want the same for me. I’m not there yet. Please be patient with me. I just cannot find the joy and peace in a world where the most important person to me is noticeably absent. It’s not just knowing you aren’t here. It’s painfully obvious that you aren’t here, that you’re never coming back, in everything I do, everywhere I go, every routine, every thought. Your absence and all that we will miss pervades my thoughts and makes it hard to have fun or find meaning in this new life. The only thing that gives me some measure of comfort is that you no longer have to worry about cancer. You no longer have to spend time in the hospital, taking medicine that makes you sick, being worried about scans. I on the other hand would take back all the anxiety and fear if it meant you were still here with us. I can only hope that you are with Pop-Pop and Great Grandma and all the cancer angels who went before and after you. I hope you are dancing up a storm, making up silly songs, and pranking everyone you meet. And I hope you are watching over us. Because I need you. It’s ironic, isn’t it, that the one person that can help me survive this nightmare is the one person who can’t? But I will always continue to look for signs, because that may be the way you are helping me through, letting me know you are still here, and that one day we will be together again. I love you to the moon and back times infinity.

Until we meet again,

Love,
Mommy

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The Trek

Just a note, some day for the next month you may get more than one post if I share my writing course writing and have something else to write about. Today is one of those days.

The next couple of months are filled with events or activities that will be hard to participate in but powerful and hopefully therapeutic. Today was one of those events. Justin Berk is a meteorologist in Maryland with a very large social media following. He had gotten involved with one of our local cancer organizations and as part of his fundraising efforts he does a trek across the state of Maryland, walking and biking. The trek is grueling in the hot August sun but he frequently reminds his followers that he and his fellow trek team have a choice to do this. Kids fighting cancer undergo unbearable and toxic treatments without the option of stopping. He and his wife Shannon have since formed their own non-profit to support children fighting cancer (Just in Power Kids) but he continues to do his trek. Each day of the trek is in honor of a child fighting cancer. Ariella was honored in 2017 and 2018. This year she was recognized as one of the “in memory of” children.

Starting last year they incorporated children into the trek by having a “kids trek too” day where children can join Justin and his team on a trail for a two mile walk. Last year I brought Ariella to the trek. She was in a wheelchair, proudly showing off her scars from her external fixator which she had removed just two months prior. She had a blast, talking with Justin almost non-stop for the two miles. I finally met in person some families who I felt I already knew quite well. It was such a great, feel good experience.

This year was much different. I wasn’t sure I would be able to go but David certainly wanted to. And Justin and his wife Shannon have supported us and Ariella so of course we wanted to support them and their charity. Not only had they honored Ariella in the trek twice but they spent time with her at our house and then in the ICU as well. Shannon responded to texts from Ariella looking for advice to manage her side effects. She also made sure to be at the hospital the day Ariella died. They are good people who are doing amazing things for the community and we felt pulled to be there. Some friends of ours were there and some friends of Ariella’s. We got to see our friends who will always be family. We got to see the hope in kids who are in remission or still fighting. We feed off their spirit. They are the strong ones. Not us.

But. Ariella should have been there. This year maybe she would have been able to walk rather than ride in the wheelchair, complaining the whole way about the heat. It was a kids trek and there David and I were, without a kid. Her absence was crushing. It was quiet without her. Seeing the other kids and families just another reminder of what we are missing (not that we ever forget but here it was, in our face). At the end of the trek, when Justin spotted me, he couldn’t hold back his tears when he pulled me in for a hug. He is sincere. He and Shannon care about every child they meet and trek for. And they are supporting Ari’s Bears. In fact, the kids were able to earn prizes and one of the options was to choose a bear to donate. We had to be there. Here’s the thing, once these people are in your life, they are in your life forever. I’m not just talking about Justin and Shannon but anyone you meet in the cancer world. You support each other. Even when you are going through hell. Because they are going through hell too. They are the only ones who truly get it. And anyone who is trying to make the lives of cancer kids better needs our support as well. Too many people look away, don’t want to face it, don’t want to imagine their child sick or dying. But David and I will be there no matter how hard it is. Ariella was there supporting others even when she was sick. She would want us to do the same. And she liked Justin and Shannon and maybe, just maybe she was following along the trek as well. Apparently the trek team viewed rainbows several days in a row.

We have some other things coming up that are also going to be quite challenging. David and I are heading to a bereaved parents retreat in Arizona. I am not sure what to expect. I hope it’s therapeutic, I am sure it will be hard. I don’t know what I hope to get out of it. Mainly I just want to connect with other parents who “get it.” And this is specific to cancer. And I think that makes a difference in being able to relate, at least right now when it’s still so fresh and raw.

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The Truth about Grief

No matter what I say, how I look, or what I do, I am not okay.  I am almost always on the verge of tears, unable to predict what will ultimately send me over the edge. 

Though I may be out, interacting, and doing seemingly normal things, it is sapping all my energy and all I really want is to be at home buried in my blankets.  I can’t go anywhere without an escape plan. 

No matter where I am or who I am with most of my thoughts are filled with Ariella.  Even if Ariella was never a part of a situation I may be in, I am thinking of her. She never leaves me. In fact in some ways she is more present now than when she was alive because my mind revolves around her.  What she should be doing, what she is missing, what we are missing, the future we no longer have. Every situation, every activity, every single facet of my life I am aware of her absence. No matter what I try to do to distract myself, no matter how distracted I seem, she is there, in my mind, in my heart, in my soul.  

Every single day I beg and pray to die so I can be with her and end this pain.  Even if I manage to have a day with some smiles and laughter. Every time I hear of a fatal accident, or someone that died of a heart attack or freak accident, I think “why couldn’t that have been me?”  I don’t want this new life of mine.

There is no moving on, no getting over this.  I will never get over the death of my daughter. I will never move on from Ariella.  At most I can hope to learn to live with it and come out of this depression that squeezes me tightly in its grasp.  

I am not living, I am only surviving (barely).  I feel like I have nothing to live for and am just existing to get through each day until I can go to sleep again.  I don’t understand the point. There is no point. What is the reason for living if there is no purpose, no joy, when your whole goal is to just survive another day while in the throes of deep anguish?

I suffer from PTSD.  I have frequent flashbacks of Ariella in the PICU.  There is no warning and each time I feel like I’m punched in the gut, I want to throw up, scream, yell, drop to my knees.  I’m not always in a place where I can do that. These are extremely traumatic images and I can’t escape them, I can’t choose not to see them.  My heart shatters again and again every time I see her in that hospital bed, sad and uncomfortable and scared. I would trade my life for hers in a heartbeat.  

Grief is more than just feeling sad.  It invades every part of your life, seeping into the farthest corners of your body and mind.  My body physically hurts, all over. I feel nauseous much of the time. I get frequent headaches.  My body shakes. My appetite changes constantly. From no appetite at all to I can’t stop eating. I can’t concentrate on anything for very long.  I lose track of conversations, stop hearing what someone is saying, lose my train of thought. My brain is in a fog. I can be in an aisle of the grocery store and forget what I am doing there, forget what I am looking for. It’s hard to pay attention to things around me, impossible to multitask.  My memory is shot. I forget to do simple daily tasks, return a text, send an email.  

Any excursion out of the house is fraught with anxiety. I am in a constant state of fight or flight.  Who am I going to have to talk to? Who will I see? Will I have a breakdown? Will I have to tell someone who doesn’t already know?  What will trigger me? I am constantly dodging landmines.  

I am forever changed by Ariella’s death.  I will never be the happy, content person I was before she died. I’m afraid to see who I will ultimately become. 

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I’ve Changed

My brother in law and sister in law kindly registered me for the Writing your Grief course I wrote about previously. Each day for 30 days we get emailed a prompt to write about your grief. Depending on the prompt and how I felt while writing I will share some here. This is another way of examining my feelings and process and more of my truth that I promised to share. Just a note that I will not share the actual prompt from which I am writing. Below is the first one. Some things I have said before in my posts (which I imagine will be the case for many of the writings) but it’s more unpolished, unedited, just writing from the heart based on the prompt.

My favorite name was Mom, Mommy, Mama.  No one calls me that anymore. I used to be content, happy.  Was so grateful for my life. We had the perfect family. Before we had our daughter we always thought we would have at least 2 children (my husband wanted 3).  But after Ariella was born our family felt complete. I always wanted a daughter. She was happy, healthy, and the perfect child. Of course she wasn’t perfect but she was kind, generous, funny and a good kid overall.  I was blessed. Never thought bad things would happen to us. I felt so lucky.  

Even though I had and still have a strong relationship with anxiety I wasn’t a huge worrier when it came to Ariella.  I guess I just thought everything would always be okay. My anxiety was related to me, not my family and I loved being a mother and loved our mother daughter relationship.  Even though I am introverted I loved to get out and do things. We always had fun family activities planned for the weekends and my husband and I enjoyed going to wine festivals, concerts, out to dinner, etc.  We kept busy. When not doing things as a family Ariella and I often did mother daughter activities. Canvas painting, painting pottery, trips to NY, musicals, hiking. I found pleasure in the big things and the little things. I was motivated to get out of bed each day.  I wanted to fill my days with fun activities. I wanted to interact with others (to a point, as I mentioned I am introverted). Life had meaning. I had a purpose, a reason to live. I felt that purpose. I was also happy to go to work. I work with children and found my job to be meaningful as well. I took pleasure in beauty.  Sunny, warm days. Nature. Beautiful scenery. I was happy for others when good things happened to them. I wanted to celebrate everything. I wouldn’t have changed anything other than my anxiety.  

 But as is human nature I also complained about trivial, petty matters.  I was easily irritated by things like long lines and traffic. I got caught up in the things that don’t really matter.  

Now.  There is none of that person left except for the anxiety which has increased threefold.  I am miserable. I hate my life now. I feel like I have zero purpose or reason to live. I haven’t been back at work yet, I return at the end of August and I think that rather than deriving meaning from my job the only benefit will be that it forces me out and helps me get into a routine.  I force myself out of bed each day and exercise but that’s it. I am not motivated to do anything else. I do meet friends for lunch or dinner but really nothing gives me pleasure. Nice days piss me off because they don’t match my mood. Nice days were family days. The three of us would do something outdoors like the pool or hikes or festivals.  I have no desire to do any of that now. I can’t even imagine enjoying the things from which I used to get some pleasure. I’m not present in my life. I’m just going through the motions. I never understood depression. But I get it now. I used to want to live a long life. I used to be afraid of dying. Not now. Now not only do I not fear death, but I would welcome it.  

I am now extremely jealous and resentful.  It seems like everyone else has what I want.  I’m jealous of the intact families. I’m jealous of the children that get to go on living.  I’m jealous of the mothers with daughters. I’m jealous of the childhood cancer survivors. They are still alive. Their parents still have hope.  My hope is nonexistent. I don’t want to celebrate anyone else. Don’t get me wrong, I don’t want bad things to happen to others and I want every pediatric cancer kid to survive.  But I’m also resentful that it wasn’t my kid that survived. And it’s hard to celebrate others when I feel like I have nothing to celebrate.  

The only positive aspect of my new persona is that I no longer care about stupid shit.  None of it matters though I don’t think I needed the death of my only child to prove that. Even though as I mentioned I did complain about minor things I tried to avoid that as much as possible and in general was an optimistic person.  Now I am cynical and pessimistic and feel like nothing will go right for me from this point forward. I feel like the universe is conspiring against me. I also realized that the people that aren’t there for me do not deserve my time or energy. In truth, some who aren’t there really don’t surprise me but previously I would still make an effort or try to see them on holidays and whatnot.  Now I don’t give a shit, whether they are family or not. I’m not going to waste my time on people who have not made an effort for me. I used to do everything in my power to avoid confrontation but I’m not afraid anymore to tell people how I’m really feeling. Not sure if this is a positive or negative change.  

I am writing about the grief of my daughter but my father died in February 2016, one year to the month before Ariella was diagnosed with cancer.  I was very close to him and devastated by his death but it didn’t rock my world like the death of my daughter. I wasn’t expecting him to die when he did (he wasn’t young but not super old but did have heart issues) but his death wasn’t out of the natural order of life.  I wasn’t angry, bitter, shattered or resentful when he died as I am now after the death of Ariella. I was sad and heartbroken but his death didn’t change me the way Ariella’s did. I do not at all like the person I have become. I hate this new version of me. It doesn’t feel like me at all.  I don’t know what to do, how to fill my days before I go back to work. I don’t know how to find happiness and right now I don’t want to find joy. This pain is real. This pain is tangible. This pain keeps me connected to Ariella.  

I used to be a kind, happy, and friendly person.  Now I am depressed and can barely give a smile to a stranger.  I used to enjoy life and look for things to do. Now I don’t want to do anything and don’t take pleasure in any of the things I used to. I used to be a caretaker, a nurturer.  Now I’m the one who needs to be taken care of. I don’t relish that role. It makes me feel less than, diminished. I don’t know who I am anymore. I don’t recognize myself.