Author: stein28

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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.  

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Collecting Signs

By now most of my readers know that I am quite skeptical when it comes to signs. But when your child dies you cling to any remote possibility that they are still around, can still hear you, and that you will one day be reunited. You desperately try to find some meaning and hope in a completely senseless situation. So I do keep my eyes open for signs. I collect signs like others collect coins or baseball cards. They give me a glimpse of hope, a little bit of light. I can look through them when I am feeling especially down. I frequently see the letter A, mostly in clouds but have seen it with sticks and straw as well.

  • Did not get a picture initially and as I continued my walk was thinking I should have taken one. When I made my way back about 15 minutes later was sad to see 3 cars drive right over it but surprised to see it still there and intact even with the cars.

Another commonly mentioned sign is deer. I don’t put too much stock into that since there are often deer in our neighborhood. However there has been a deer lately that has allowed us to get fairly close and the other day she was there with two babies. She has been hanging out in plain sight for quite a while lately and even when we get too close she doesn’t stray too far.

I have been seeking out grief books and blogs, especially ones written by bereaved parents. Most mention signs. They say to ask for signs. One mentioned to ask for crazy signs, things that are completely random, like she did with a purple elephant. And sure enough she got her sign. So I decided to try that. I asked for a purple elephant.

And there is my purple elephant. Spotted in a store in a part of town I almost never visit. I’m trying to keep an open mind. The other night we were outside on our deck and had a lit candle on the table. The flame grew quite bright several times. I wasn’t the only one who noticed it. I said maybe it’s Ariella saying hello. And after that it didn’t happen again even though we were out there a while longer. Maybe she was trying to make her presence known and once it was acknowledged she knew she could stop. We will never know. Well maybe we will one day? I still see 11:11 and the number 11 quite a bit. I had lunch with a friend the other day and I looked at the total on the register and it was $11.11. I see big yellow butterflies all over but it’s summer and butterflies are common. Not sure if that’s a sign. I did ask for a blue butterfly which I see less frequently, and one flew quite close to me and landed on a nearby bush with its wings spread so I could clearly see the blue. The next day one appeared on a TV show I was watching. Ariella really liked the song High Hopes and I hear it most days in my car. I first started thinking of that song as a sign when I heard it multiple times a day soon after she died and quite often when I had been going to or leaving the cemetery. And I heard it the other day at the baseball game. I don’t think I have ever seen a hummingbird up close in person. Last night when I opened the front door there was one just hanging out there, looking toward the house. I didn’t even realize what it was at first and once I noticed it, it flew away. Signs or coincidences? Not sure that we’ll ever know but I will keep asking for random signs and see what happens.

Seeing what may be signs does not make it any easier to live without Ariella. I like the idea that she is still around but that does not change the fact that her physical presence is missing. She is not here to hug and kiss and nurture. She will never grow up, never have all of the opportunities of which she dreamed. There are so, so many things I will never get to do with her and nothing will change that. If the signs are real what they do is reassure me that Ariella’s eleven short years were not it for her. Because it is impossible to come to terms with the fact that Ariella or any child that dies only gets to have such a short amount of time and that’s it for them. Her work here wasn’t done, she was only just getting started. She had so much good left to do. Eleven years is not enough and maybe, just maybe, she’s able to continue doing her good wherever she is.

And of course if she is able to send signs then she has a cognizance of our world and knows that we need to hear from her. And that though she is physically gone she is spiritually still alive and that means one day we will be together again. I just wish that day would come much, much sooner rather than later.

I don’t know what it will take for me to truly be a believer. Just about any of the signs I have seen/mentioned can easily be explained away. But as I’ve said I am grasping at anything to keep me going.

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Good and Bad

This weekend was both good for my soul and extremely hard. David had college friends in town, a married couple, and they are very good people. They drove in (with others) for Ariella’s funeral without hesitation (which is more than I can say for some people who without a doubt should have been there) and since the wife was about an hour away all week for a conference, her husband drove in Friday so we could spend the weekend together. It was good being with people who did not know Ariella. A lot of my friends became my friends because our kids were connected. That’s hard. A constant reminder for what Ariella would be doing if she were still here. This was different. We aren’t in each others’ worlds because of kids. They do not even have children so conversation was very different.

We had a grand old time. We showed them Baltimore (the good and the bad), took them to an Orioles game, and introduced them to Maryland crabs and snowballs. A great distraction and I really was distracted for a while. But all of a sudden it was just too much. I just couldn’t be “on” anymore. I wasn’t pretending when we were together. I was “okay”. As okay as I can be right now. I definitely wasn’t my old self but I also mostly wasn’t on the verge of tears either. And that’s the thing. I need to have time to be sad. I need to have time to be with my feelings. I need time to just be. Distraction is good and it’s bad. When the thoughts and the feelings are hidden for too long they build up and I feel like I am going to explode. Every emotion and feeling will just come spewing out. And I reached that point. I was done. Kaput. Could not take anymore. Just wanted to curl up in bed and hide from the world.

I am spent. Engaging with the world is exhausting. Interacting with others is exhausting. My body physically hurts all over. There is no end to this nightmare I am living. I appreciate the moments of distraction. But I pay the price for them later on. I miss who I used to be and I know I will never be that person again. How do you continue living when you don’t like who you are or the life you have?

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The Days Keep Dragging

Another calendar month has come and gone. People keep remarking how fast the summer is flying by. For me it’s dragging. Every day is a lifetime filled with nonstop thoughts of Ariella. The thoughts change but are always about Ariella. About what we are missing. About how much I miss her. About how much I want to hear her voice and tell her about my day. About her days in the hospital. About what we could have done differently. She is all around me. Everything is a reminder. And I mean everything. Nothing is safe. She is a constant in my life no matter what I am doing or where I go. Some thoughts are happy memories though they make me sad, and some are tragic. Doesn’t matter. I can’t escape them. 24/7 I am missing my daughter. I count down the minutes until I can go to sleep once again. I survived another day. But then I wake up. Another day to get through. I force myself out of bed. I run or go to the gym, the only thing that remotely helps me right now. And I try to fill the rest of my day until I can sleep again. The summer can’t end soon enough. I’m anxious about going back to work but at least my days will be filled. I’ll have a routine. I’ll have no choice but to get out of bed. I’ll have no choice but to keep myself busy at my job.

Work though is going to bring its own set of worries. I work with children. Everyday I’ll interact with children near Ariella’s age. I will watch them learn and progress and grow. Some of my students I’ve known for several years. They know I have a daughter. They ask about her. They didn’t know she was sick. How do I respond when they ask about her now? Some of them are the same age, in the same grade Ariella would be. How? How am I going to watch these kids learn and experience all the things Ariella will never get to experience? I love my job and I love my students but this is going to be a real test. And not just the interaction with the kids, but interaction with the staff as well. I work in multiple schools so I don’t get to know staff at any individual school very well. But they are aware of the situation. I am mostly in the same schools as last year so I am dreading the first week or so back, having those conversations with people I don’t know all that well. I just hope that it’s far enough out that when they see me it’s not immediately on their minds. I am relieved to be in the same schools because the thought of adjusting to new schools on top of everything else was increasing my anxiety about going back. At least I’ll be dealing with the familiar (other than one new school).

I’ve got a little over three weeks left to fill before I go back to work. I’ve had so many offers for lunch, dinner, etc. and I appreciate them, I really do. I can’t accept them all. While doing nothing isn’t good, doing too much isn’t good either. I pay for it later. Interacting with others is exhausting. Making small talk is exhausting. No matter who I’m with it always hits me what I’m missing, what our lives are missing and as soon as I leave, the world comes crashing down yet again. I’ve always been introverted and even more so now I prefer to be alone most of the time. It’s actually quite the conundrum. I want to be alone but I need to fill my days. I don’t want to just mindlessly stare at the TV all day but I don’t want to go out and do much of anything. Nothing is the right thing so I am trying to find that right balance of not shutting myself completely off but also not exerting myself too much.

I never understood depression before. Anxiety and I had/have a very close relationship, I know anxiety quite well, but was not so familiar with depression. I just didn’t understand how life could feel so bad that one would have no motivation to do anything or be able to take pleasure in various experiences and activities. It made no sense to me. No matter how bad things seemed there was always pleasure and happiness to be had along with the bad times. I get it now. The root of the depression may be different, mine being situational, but I fully understand lack of motivation and being unable to experience joy. It is a dreadful way to live, feeling like there is no reason to keep on going. What is the point of living without happiness, meaning, or purpose? Why suffer through that? If anyone has the answer to that I’d love to hear it.

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Chaos Theory

I’m sure everyone is familiar with Chaos Theory. That one very small change early on can cause a much larger difference in a later state. I often wonder how this plays into Ariella’s illness and death. If we had caught the cancer sooner, when she first complained of leg pain, would this have changed her outcome at all? Would she have responded better to the chemo? Would she still have relapsed or would have starting treatment earlier changed that? Her scans that showed the relapse were done on a Friday. If we didn’t have the scans until the following week would that have changed anything? Treatment would have started a bit later getting meaning her bone marrow transplant would have been a bit later. Would that have changed the ultimate outcome? Maybe she wouldn’t have been exposed to the flu. Maybe she wouldn’t have gotten so many infections. Maybe, maybe, maybe.

We of course will never know if the outcome would be different. But these “what ifs” torture me. They frequently pervade my thoughts. I replay all the various scenarios over and over. If only we had done this, or if this one thing didn’t happen then maybe the rest of it wouldn’t have. It seemed like we were in the midst of this perfect storm where Ariella was getting bombarded with every possible infection and complication. What if just one variable had changed? What if just one thing had been done differently? Would we still be here without our daughter?

People are going to say to stop doing this to myself. It was nothing we did or didn’t do and tormenting myself about it won’t change anything. Logically I get that. Running these thoughts through my brain over and over does not serve any purpose. And yet I cannot stop. Because the thing is, Ariella dying never once crossed our minds when we were considering bone marrow transplant. I fully believe that one small change initially would have altered the outcome drastically. Whether it was the timing of transplant, administering of different meds sooner, a different doctor on duty earlier on in the ICU stay, etc. And this only contributes to my anguish. Because her death, at least following transplant, did not have to happen. And I will never come to terms with it.

If only we could turn back time. I’m actually not sure where I would turn it back to. Maybe to when she very first started complaining of leg pain. If we caught the cancer sooner maybe she wouldn’t have had any of those micrometastatic cells that didn’t respond to chemo. I’m not sure I would turn it back to when she relapsed. I don’t know that we would do anything different except maybe start alternative treatments sooner. I would turn it back to BMT and not do it. But once again, who knows what effects those changes would have on the greater outcome? I am sure that if we could go back and not do the transplant Ariella would still be with us. I can’t say for how long but could have been a lifetime.

Not only am I facing a lifetime without my daughter, without the person that completed me, but I am also facing a lifetime of questioning every decision that was made. If only, if only, if only.