bereavement - Living with Grief

August 23, 2019

Grief is Everywhere

Grief is everywhere. It’s there as soon as I wake up in the morning, facing yet another day without my favorite person, the one that is and always will be a part of me. When I look at the clock and wonder why I should get out of bed that day. What is the point? I have no purpose anymore. Nothing to live for. The one person that needed me. That truly needed me, is gone. I have no one to take care of anymore.

Grief is there when I am walking my dog. She should be walking the dog with me. Grief is in the rocks she would have collected, the pictures she would have taken of the flowers or the sky or the deer we sometimes see, and in the bugs she would have screamed about and run away from.

Grief is there when I force myself to run or go to the gym. It’s in the songs that are played that make me think of her, whether it’s the lyrics, a particularly meaningful song, or just a song she liked. It’s when I take an exercise class I think she would enjoy. It’s when I think about being uncomfortable when exercising and then remember all the pain (physical and emotional) and discomfort that she tolerated and realize my exercise is nothing compared to that. It’s when I then push myself even harder, almost to my breaking point, almost like a punishment.

Grief is there when I am in the shower. Nothing else to distract me, just thinking about my girl. The thoughts vary but they are always about Ariella. Memories we have and memories we will never get to make. I think about everything I am missing.

Grief is there when I am in my car. Again in the songs I hear. Listening to the talk radio show that we listened to whenever she had morning appointments. Seeing the picturesque sunrises on the way to those morning appointments, maybe even pulling over so she could take a picture. Remembering all the times I drove her to appointments. Remembering picking her up from school and then racing to the dance studio. Missing the silly things she did in the car; taking video of me driving, singing made up songs, sticking her head out the window, playing “sweet and sour” (waving to people in other cars and seeing who smiled or waved back), messing with the radio. Mostly missing all the conversations we had in the car.

Grief is there when I go to the grocery store. Seeing the bear that is hidden in Trader Joe’s for children to find. That was always her mission when going to the store, to find the bear. And more recently she enjoyed having her own list of items to shop for. Grief is in all the food I no longer need to buy. Cheese sticks and the yogurt she liked, granola bars, the snacks she liked. Every aisle a reminder of who is missing. Grief is seeing the employees who knew Ariella from a toddler. Who announced her birthday over the intercom and gave her flowers (before she was ever sick). Who supported her and us throughout her illness and continue to support us now. They even sent us a Trader Joe’s bear and made a donation to our foundation. Trader Joe’s was actually the hardest place to return to after Ariella died because we know the staff there and until more recently was a place Ariella always went to with us (as she got older she often chose to stay home rather than shop with us). But grief is not just at Trader Joe’s, it’s at any grocery store. In her favorite foods, in the toy aisle when she would beg for the crappy items, in the whining that it was taking so long. And grief is in the possibility that I will run into someone I know, and have to make small talk or talk about how I am doing.

Grief is there when I watch TV. In the commercial jingles that she would sing along to (“We are Farmers..”, Liberty, 1-800-Contacts, etc.). In the shows we don’t get to watch together. I actually don’t watch much TV anymore. It just all seems so meaningless to me. I mainly have HGTV on, often just for the background noise. But she would love some of those shows on there. The grief is in not being able to talk about those shows with her. It’s in not being able to watch the newest season of Stranger Things because she loved that show and was looking forward to binge watching this season with her cousin through FaceTime, who lives across the country. I can’t watch it without her. Without being able to discuss it with her. It’s in never finishing even one season of Gilmore Girls with her. We started watching together when she was in the hospital.

Grief is there when I am cooking dinner. It’s in cooking for two, not three. It’s in not hearing her complain about setting the table and in not being asked for help with homework while I’m trying to cook. Grief is missing her excitement when I was cooking her favorite foods. Grief is missing her potty mouth at dinner (I never could win that battle as it was her father and her against me) and her dumb jokes. It’s the empty place at the table.

Grief is there when I am with my friends. It’s knowing their families are intact and mine isn’t. It’s knowing their children are doing things Ariella should be doing along with them. It’s knowing that the younger children will soon surpass Ariella. It’s in hearing about their children when all I can share about my child is memories.

Grief is even in activities I find therapeutic. In painting pottery or doing a canvas paint night. I have found those activities soothing and yet grief is ever present. Those are activities Ariella and I often did together. Even in the few months after Ariella was born I took her to a pottery painting place to paint her footprint on pottery pieces. I see all the objects Ariella would want to paint. I remember all the times I took her to the kids canvas painting workshops. She loved those activities. We will never get to share them again.

Grief is there when I am settling down for the night. It’s in not having to pack Ariella a lunch for the next day. It’s in not having to check homework and then persuade her to get in the shower. It’s in not watching TV together before bed and in not reading together. It’s in not having her give me her special stuffed animal when I’m not feeling well and in not being asked for a back scratch. It’s in all the empty time I have to fill. Time that once seemed so hectic and busy but what made my life meaningful. Grief is in trying to fill all that time until it’s a reasonable time for me to go to sleep.

Grief is everywhere. It’s in the conversations I hear around me. “How are your kids?” “What grade are they going into?” “Do they play any sports?” “My kid is so excited for…” “My summer was great. How was yours?” It’s in a beautiful day I can’t share with my daughter. It’s in a funny story I can’t tell her. It’s in the cute animal picture I can’t show her and in the funny video she can’t watch. It’s in every day, routine tasks because she is missing from them. I was actively parenting and now I’m not. When your role shifts so dramatically there is no escaping the grief. Parenting was my life and now I’m lost. I’m missing Ariella immensely and along with that I am missing my identity, my most important role, and all the future moments we will never get to have. I am not only grieving the loss of Ariella but also all the future milestones never to be reached, the unfulfilled plans and dreams. Every moment is touched with grief.

August 18, 2019

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.

August 12, 2019

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.