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.
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.Â
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.
My sister-in-law has been searching for a way to help. She doesn’t live local to us and she knows words are pretty meaningless. But that doesn’t stop her from texting to let me know she’s still here, and I appreciate that more than I think she realizes, especially since I don’t always respond. She recently sent me a book that I found to be pretty helpful. It’s called “It’s Ok that You’re not Ok” by Megan Devine and it’s different in that it is helpful for the person who is grieving, but is also helpful for those who are trying to support the grieving person. It’s not specific to child loss but this book doesn’t need to be. There are practical tips for trying to relieve some suffering, and she makes a significant distinction between the pain and suffering. The gist is that the pain is not going anywhere. It’s here to stay. But the griever can try to reduce some of his or her suffering.
The book follows the premise that society and our culture want to fix everything. Humans don’t want to see others in pain. “Healthy” people are happy, motivated, enjoy life. There is something wrong with you if you can’t get beyond the pain of the loss, if you’re unhappy, if you are withdrawing from people and life in general. This book negates that. This book is trying to change our view as a whole on grieving and loss. Rather than perpetuate the common thoughts and cliches the author of this book makes it clear that none of it is okay, that it never will be okay, that how you want to deal with it is okay, and it’s about the griever, not those trying to support them. She does not encourage staying in the dark period forever but she is also realistic that it’s unlikely for someone who experienced a significant loss to one day go back to having a “normal” happy life. She encourages trying to find that middle path, trying to go back to living with the grief rather than trying to overcome it.
This book really resonated with me. Her strategies for trying to reduce the suffering are doable and some that I am already incorporating (writing and exercising to name two. She actually offers an online course “Writing your Grief” which is intriguing to me but the price is a bit steep). None of what she wrote was surprising to me. I felt like she was reading my mind. But it’s encouraging to know my thoughts and behaviors are okay and to be expected. I like that she didn’t paint a rosy picture at the end of it all. Because I wouldn’t trust that. I like that she is realistic and normalizes the experience of grieving. And I like that she is brutally honest that profound loss forever changes you and despite what any of your supporters may say your goal should not be to go back to the person you were before the loss. That will never happen.
The reason I am mentioning this book here is because so many people say they wish they knew how to help. I think their idea of help is to help get rid of the pain, help the griever move on. That isn’t going to happen. But it does offer concrete ways to provide support. The first couple parts of the book explain what is going on in the mind and body of someone who is grieving and why they may react certain ways to those trying to help. The third part of the book has a chapter for the supporters. It will help the supporters provide comfort and help more effectively but also remind them that if they are rebuked it’s not personal. For those that want to try to understand a bit more I encourage you to pick up this book. The author also has a site and Facebook page, Refuge in Grief.
I have mentioned before that so far I am fortunate that my supporters have met me where I am. No one is trying to push me out of my safe places and they all are following my lead. Today for example. I had rallied some of Ariella’s friends to go to Build-a-Bear and use up some of the gift cards she had received to build up our inventory for Ari’s Bears. When David and I got there to meet her friends I could not set foot into the store. We had been there so many times with Ariella and her friends and I just couldn’t do it without her. We had so much fun in the store. Selecting the different animals and dressing them in the perfect outfits and accessories. Sometimes we were there for several hours. The staff and managers knew her. We had met strangers in the store who donated to us on the spot when they heard about what we are doing. Many weekends were spent making bears. That was what she wanted to do. I don’t know why I was able to go to the hospital to deliver bears but Build a Bear did me in. There is no rhyme or reason to it, no predicting what will be impossible and what will be okay until I’m in it. But the point is that my friend whose daughter was there sat with me outside the store, didn’t try to encourage me to go in, and was just there.
I really hate this life I’m living right now. I don’t like being crippled by the idea of going into a store. I also don’t like how exposed and vulnerable I feel when I am out. The pain is ever present but on the other hand it doesn’t feel right that the pain should ever soften. How can it? The person who completed me, completed our family has died. How does the pain of that ever go away, or even soften? I don’t want to live with this pain forever but I also don’t want it to go away. The pain is my strongest connection to Ariella. It’s real, it’s tangible. Relief of some of the pain seems like a betrayal. But living a lifetime like this is not feasible either. There is an extremely long, windy, and rocky road ahead of us and I just don’t know how I’m going to make it through.
