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The Outsider

I am the outsider. I can’t speak for David if he feels it as well but I most definitely feel out of place. Like I don’t belong. I’m there but not fully participating. In life, in gatherings. Not by the fault of anyone else. It just is. I am the outsider in my family. They always include us, always. And understand when we don’t join. And yet I am on the fringes. Because I am always stained with sadness. I cannot fully revel in the joy or excitement of my surroundings, in the happiness of others. Especially when the whole family is together. Because it’s the whole family minus one. And the missing piece is glaring. When it comes to family gatherings I do much better if it’s just some of us. Ariella’s absence isn’t so obvious. She may or may not have been there when she was still alive. But the whole family, she would be there. And now she’s not. And so rather than being able to enjoy myself my heart is on the one person that should be there but isn’t. It’s too painful to be so aware while seeing the rest of the group smile and laugh and have a great time like everything’s okay. I am the outsider, the downer.

I am an outsider amongst my friends. Especially when in groups. Also through no fault of their own. Inevitably conversation turns to their kids. I don’t mind that. I like hearing about their lives. But I have nothing to contribute. I have no living children and I have no new stories about Ariella to share. I can’t comment on the bitter sweetness of watching our children grow up too quickly. I can’t commiserate about the trying teenage years. I can’t share the excitement of my child’s achievements. Ariella was not my only loss. I also loss my identity as a mother. Yes I’m still a mother. I will always be Ariella’s mother. And yet. I’m not parenting. Plenty of people choose not to have children. This is not the same. Because of the pain that accompanies these situations. Knowing we once had the same promise and hopes and now we don’t.

Even among other bereaved parents I feel like an outsider, except among those that also lost their only child. Those parents still have their purpose. They still get to raise kids, watch them grow up, maintain their identities as parents. As someone who has always had social anxiety, I feel even less able to relate now. It can be a very lonely place. I’ve been doing what I can to keep busy, meet new people, and just stay active. I’ve joined running groups and actually started golf lessons. It’s good for me. Good to be involved in specific activities, to be involved in something that revolves around that activity.

I have found that while my grief has changed, meaning mostly that I’ve learned to live with it and even enjoy myself sometimes, the hurt has actually gotten worse. I’m witnessing Ariella’s friends grow up, her younger friends surpass her and find myself thinking more and more of everything that was lost, the future she will never have, that we will never have. David and I went to a wedding a couple of weeks ago and for the first time I had the parents’ perspective rather than the perspective as a peer. Listening to the father of the bride’s toast and watching the father daughter dance hit me so hard. We will never have that. And in those moments that was all I could think about.

This was a difficult post to write. I’ve had a hard time getting my thoughts together and I still don’t think I’ve captured my true feelings. Someone said to me that she had hoped that I’ve turned a corner in my grief. Not because she thinks I should be “better” but because she doesn’t want to see me in such pain. I feel like I have turned a corner. I do have more moments of fun and I no longer beg to die. I don’t have moments of true happiness and I don’t think I ever will. But I can experience joy and even peace at times. It’s a dichotomy though. I don’t feel guilt, but I don’t understand how I can have those joyful and peaceful moments. It doesn’t feel right. Mostly what I’ve realized is that there is no linear pattern to grief. Just when I think I’m doing okay I’ll have a day or even just a moment that completely disabuses me of that idea, when I think there’s no way that I will make it. I still cannot fathom another lifetime of feeling this way and in fact I dread it, but I also know that somehow I will survive it and will even have some fun along the way.

On a completely unrelated topic, I’ve been pretty vocal about my feelings on signs. I ask for them and have received every sign from Ariella that I have asked for and yet am still cynical that they are just coincidences. I wish I was a true believer. I think that would make life a little easier, knowing she really is there and that we really will be reunited one day. In that sense I am jealous of those that have such a strong faith. That there is no doubt in their minds that they will see their loved ones in the afterlife. But that isn’t me. Yet I continue to ask for signs. I rarely ask my dad for signs but decided I wanted one from him. My dad always used to say “don’t take any wooden nickels” so I asked for a wooden nickel as a sign. It’s not a very common turn of phrase and I don’t think I’ve heard or seen any reference to a wooden nickel since he died. I figured the chances of getting the sign were slim to none. And then this happened…

Also has the word “heaven” Coincidence?

Still not sure what to think but I do like to think that signs are real. So I will continue to ask for them and be skeptical when I receive them!

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Do Something

It shouldn’t take tragedy to elicit change. After yesterday’s horrific tragedy, yet another school shooting, you once again see all the news, all the social media posts. “We need change”. “Something needs to be done”. And my favorite, “thoughts and prayers”. Social media statuses will be updated. Profile pictures changed. The same posts shared over and over. Parents will post about being blessed, not taking anything for granted, hugging their children tighter. This will go on for a couple news cycles and once again the country will move on. And you know who the new advocates are going to be? The 19 sets of parents mourning their young children. The families of the the two teachers. How do I know this? I know this because 1800 children die of cancer every year (47 diagnosed every day) and yet the ones who advocate for more funding, more research, are the parents of cancer warriors. I am not comparing cancer to a school shooting. I am just speaking from my experience as a parent who lost a child, who is fighting for a different kind of change. This is about fostering real change rather than empty promises. Instead of just making a post, commenting with a broken heart emoji or crying face, DO SOMETHING! Start a petition, send letters, push for safer schools, anything. Not just in the immediate aftermath of a tragedy but all the time. Don’t leave it to the parents who will be grieving for the rest of their lives. They need help.

As a bereaved parent I am so heartbroken for these parents who lost children to something that could have been prevented. And I am angry on their behalf that there is not enough outrage in between these tragedies to actually cause some sort of visible change. I’m sick of the platitudes. The common theme is that something needs to be done. But when? Too late for too many. Actual action needs to be taken before the next tragedy. Because it will happen again. And it may just be your child next time.

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1095 Days

Three years. 1095 days. 26, 280 hours. 1,576,800 minutes. 94,608,000 seconds. And I feel every one. Painfully aware of my missing piece in every second I have lived without you. Written out like that it looks like a lifetime. It feels like a lifetime. It feels like a minute. I didn’t think I would survive a minute, a second, and somehow I have survived three years. Yet I don’t feel like I can survive another lifetime.

This just doesn’t get easier. I don’t want it to. Life shouldn’t be easy without you in it. You were too special, too precious for me to live easy without you. I know what I’ve lost. I know what you’ve lost. And every day I’m reminded of it. What can possibly be easy about that? Life continues to go on. People forget. Well not forget, but for them it’s no longer as intense. They no longer realize the intense pain I experience every one of those seconds. It’s not foremost in their minds. It’s been 3 years. For most it seems like a while. For me it’s like yesterday. They have their own lives, their own joys and celebrations, their own pains, their own traumas. They think I’m okay. I’m not. I hate the question “how are you?” Most don’t want the real answer. Most are just making conversation. I feel like an imposter. Leading a double life. The one in which I act like everything is fine and the one in which I feel like I’m dying inside.

To watch your friends grow up, reach milestones shatters me. Your younger friends and family surpassing you in age. Experiencing things you never had the chance to and yet in an ironic twist of fate you had to grow up much too quickly and were wise beyond your years. How can I ever be okay with the constant reminders of what never was and what never will be? There are days I want to just scream out loud that you died. That my lovely, only child died. It feels like such a disconnect to be out in the world and living my life when you are no longer and I just feel like the world should know. Especially when I don’t feel like smiling, when I don’t feel like making small talk. Especially when people start talking about their children and their perfect lives. I smile and nod and desperately want to run away.

I am futilely trying to fill this hole that seems to be growing bigger. Maybe it will continue to grow and grow and swallow me whole. I have learned to live without you but I don’t like it. The things I do are meaningless without you. They are just time killers, a way to get through the days. That’s not to say I don’t have my moments of fun. I do. And they are more frequent as time goes on. But they are fleeting and always tainted, never pure joy. The highs often turn into lows because I don’t have you to share them with. And that disconnect. How can I be happy in a world without you? Bittersweet. Always on my mind.

It pains me to not know who you would be today. Your likes/dislikes. Your friends. Your aspirations. Your hopes. Your dreams for the future. I used to imagine you in different scenarios but it’s getting harder and harder to do that. I can’t picture you dating, choosing colleges, becoming a young woman. Well I can a little but the picture is probably not accurate. This life is just too hard and empty. No one should have to live like this and yet too many do. I will continue to do what I have been doing, just finding ways to pass the time knowing that one day it will all be over.

Three years ago we made an agonizing choice that no parent should ever have to make. We made the decision to turn off the machine that was breathing for you, keeping you here with us. The only thing separating life and death. We laid in bed with you, holding you, as the settings were lowered, and then lowered again, continuing to be lowered until it was off. Until there was only you and us and silence, and clinging to the last minute unrealistic hope that maybe, just maybe, you would take a breath on your own, then another, and another. Because hope is all we had. Without hope, how could we keep going? Hope is what carried us through from the time of diagnosis until the time of your death. Our hopes changed throughout but it was always there. Always a glimmer. Until there wasn’t. Until there was nothing left to hope for. We did not get the miracle that so many were praying for and we continued to hold you until the time of death was announced. That was when “Fight Song” came on. That was when the sun came out outside. That was when my world was shattered into pieces and that is how it remains today. I’ve tried to put back together some of those pieces but it’s impossible. Many are missing. One very important one that can never be put back, that will always leave me less than whole. They don’t fit together well. There are scars and cracks and they are sharp and jagged and cut me. I am fragile and know that it won’t take much to shatter me again, and again. And yet I’m still here. Broken.

I will forever be honored that I got to be your mom. I like to think that I was chosen for the job, that somehow G-d had so much faith in me that I would be able to parent you through an illness in the way that you needed. That I was the one picked for you to love and support you through all of your trauma. If I had to go back and do it again I would always choose you to be my daughter. Even with the pain and heartbreak, getting to be your mom makes it worth it. Those 11 years and 7 months. Not nearly enough time. But yet. I got to be your mom for 11 years and 7 months. And I wouldn’t trade that for anything.

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Dominican Vacation

Just came back from vacation in the Dominican Republic. This was a long time coming; we were supposed to go in June 2020 but maybe it worked out for the best. With the way this school year has been going I certainly needed the vacation so it came at the perfect time. This was an all-expenses paid, all-inclusive vacation gifted to us by Team Campbell Foundation (https://teamcampbellfoundation.org/). Unlike our other trips for bereaved parents, the various retreats we have attended, this was just a vacation. The retreats are extremely beneficial, therapeutic and sometimes healing, but they are most definitely not relaxing. They are agonizing and heartbreaking. Not really a chance to connect with your partner but more a chance to connect with other families which is incredible but also exhausting. Sharing your own grief can help lighten the load but taking on the grief of others can be burdensome. This vacation was just that, a vacation. Relaxing mostly, active when we needed a change, and overall just peaceful.

After a long Saturday of travelling we toasted our arrival with some beers.

Arriving at the resort we were eager to explore the property and take in the beauty of the area. We quickly settled into our routine of relaxing at the pool or beach, eating, and sometimes working out. The weather was beautiful and you couldn’t beat the scenery. It was quite calming just being there.

Though calm is good, after several days of taking it slow and easy David and I were both getting antsy so decided to go on a couple of adventures. The first was zip lining. This was something that fearless Ariella would have loved and it was impossible not to imagine her with us, soaring over the trees, screaming with laughter.

Our other off-resort adventure was dune buggies. Another one Ariella probably would have liked though it’s difficult to completely say. She would have loved the bouncing and speed but not so much the dust blowing in her face. As part of this excursion we got to swim in a cool little cave, taste some coffee and chocolate, and learn a little about the Dominican history.

It was a nice vacation. Plenty of downtime with just the right amount of activity. Time to reconnect without life to get in the way. But there were lots of families with children there. And I couldn’t stop thinking about what a beautiful family vacation that would have been. I couldn’t help but wonder what Ariella would do. At 14 she probably would have ditched us and spent her time in the teen area. She would have complained about being bored in the ocean. The waves weren’t big enough for her. She would have loved the ziplining and would have wanted to go snorkeling. But I can’t know for sure. The Ariella I know is forever stuck at 11. Who knows what her likes and dislikes would be now? Who knows who she would be? So I’m left imagining. Even though this was a place none of us had ever been, her absence was immensely felt. This is life now. Never completely content. Never able to be fully at peace.
We are so grateful to Team Campbell Foundation for giving us the gift of time free from distractions, the gift of connection, the gift of sunshine and warmth, and the gift of some quiet. It was much needed and quite restorative.

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February Sucks

I stay away from Facebook memories, especially this time of year. I don’t need them to remind me of how terrible things were. How much sickness and angst and worry and fear we were all going through. February through May are impossible. February is the anniversary of my father’s death. I remember how heartbroken Ariella was. We were on the way to her dance class when my aunt called to share the horrible news. I immediately turned the car around and went home where I told David and we all just held each other. Ariella was so close to her Pop-Pop. He played countless games of Candyland with her (and I don’t think he cheated with her like he did with me so I would win to end the games sooner) and silly games that she made up. He made the same dumb dad jokes he did with me, thrilled to have a new audience to appreciate them. She missed him when he was in Florida and asked to see him all the time when he was in town. She was devastated when he died. She felt guilty because she didn’t respond to his last text message. She frequently read it and did respond after he died, and she would often call his phone to leave a message on his voicemail telling him how much she loved and missed him.

February is the anniversary of Ariella’s diagnosis. I wanted to do something fun for the month of Valentine’s Day. Each morning before she woke up I was going to tape a heart on the door with a trait written on it that Ariella exhibited, such as funny, loving, generous, etc. I didn’t realize that by the 3rd day I would be writing traits such as strong, resilient, fierce, fighter, brave. Because even though we pretty much knew a day or so prior, February 3rd, after a full day of tests and exams, was the day we were told definitively “Ariella has cancer”.

February was the last month Ariella ever danced. It was the last month in 2017 she danced before her treatment started and after she eased back into it, it was the last month in 2019 that she ever danced. Ever.

February is the anniversary of Ariella’s bone marrow transplant, the beginning of the end, though of course we didn’t know that at the time. We were filled with hope, that this was the answer to keep those pesky cancer cells from returning. If only.

If you ask me how I am, I always say “I’m okay”, “hanging in there”, “taking it one day at a time.” I am hanging in and I am taking it day by day or sometimes hour by hour, minute by minutes. But though I may look and seem okay, I am not. I’ve just learned how to fake it, how to cover it up. We’re nearing three years without our girl and it doesn’t get easier, or it hasn’t yet for me. I still beg and plead to be taken early. I don’t feel the need to be here. Not only do I not fear death but I still would welcome it so I can be with Ariella and free from this constant, relentless ache. I still cannot fathom that this is my life. That I had a daughter. That I had a daughter with cancer. That I no longer have a living daughter. It doesn’t feel real and yet it feels all too real. It feels like a lifetime, it feels like a minute. Flashbacks to those days in the hospital, the truly horrible moments, make my heart pound and and my breath quicken, like I am physically there. Like I never left. Thinking about the happy moments make me smile and cry at the same time. Thinking of what we had and what we will never get to experience. What Ariella never got to experience. Thinking of her beautiful flame being extinguished way too soon. That we will never hear her infectious laugh or feel the warmth of her hugs. How could such a lively, exuberant girl be gone? It doesn’t seem possible. When I think of the many years I have ahead of me I feel physically sick. I don’t want to suffer through 40 more years. I don’t want to suffer for another minute. And yet somehow I do. Somehow it’s been 5 years from diagnosis, 3 years from bone marrow transplant and almost 3 years without her extraordinary soul here on Earth. This is not to say I haven’t had my moments of enjoyment and things to look forward to. I have. But they just aren’t enough.

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Running Towards Memories

On this frigid but beautiful sunny day, my marathon training took me to the BWI Airport bike path. As I was getting myself together to run 16 miles I was able to watch the sunrise and planes land. I don’t thank the weather app was right about the actual feel because it wasn’t windy. Though the temp was lower it felt better than last week’s long run, which was quite windy.

I have only been to this bike path once, with David and Ariella. We took her there to ride bikes. At the time we weren’t sure she could manage the more than 10-mile loop but she was a tough and fearless 8-year-old girl and did so with no problems. Though it has been almost 6 years since biking the path, I was running towards memories as I made my way around the loop. I remembered the horse we said hi too and then sitting on the bench nearby for a little break. Could one of the horses I saw today be the same one?

I remembered the long, steep hill she rode up without stopping, with not only David and me cheering her on but others on the path. Remembering Ariella’s strength going up that hill is how I got up that hill today. But of course remembering Ariella’s strength always is what gets me through tough times.

I remembered the nervousness I felt that she would crash into another person, or would fall when crossing an intersection. I remembered the wooden bridges and the overpass like it was yesterday. I remembered the relief that I felt when we completed the loop, making it unscathed. Had you asked me to describe the path before running today I would have vaguely mentioned a couple hills and horses. But while out there experiencing it once again it was as familiar to me as my own neighborhood. And it was both painful and beautiful. Because it felt like she was there with me, cheering me on like we had once cheered her on.

There’s not much to do but think when on long runs. My mind drifts but today Ariella was with me the entire way.

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Vacation

I’ve been wanting to write about my vacation since we got home but just hadn’t gotten to it. Not sure why. I had plenty of time considering my winter break was extended but for some reason when I have nothing to do it’s even harder to be productive. As much as I did not want the extended break because those days will be added to the end of the school year, it was nice to be home with nothing to do. But now, with this snow day I am officially bored and figured it was finally time to write about our trip.

As always, it feels good to get away. It doesn’t lessen the pain of missing Ariella but going to a place that is not fraught with memories helps to soften the edges of grief. We started our vacation in Delray Beach, FL where we got to spend time with my aunt and David’s grandmother. We don’t see them enough and it was good to be with family. We didn’t have to put on any kind of act or brave face, we just had to enjoy each others’ company. I made sure to get my run in, we paid a visit to the beach, and had some tasty meals (Chinese food on Christmas Eve; can’t go wrong there). But mostly we were just together.

On Christmas day we headed to Ft. Lauderdale to spend the evening with a friend and her girlfriend. I have mentioned before about how grief changes relationships in many ways. Some relationships don’t survive but others grow and you find people there for you that you wouldn’t necessarily expect. This friend we visited wasn’t a close friend. We all went to school together but our relationship didn’t really go beyond that. But she has reached out sincerely many times since Ariella died and we have learned that she will always be someone we can rely on for support. We had a nice evening on her roof just shooting the shit and enjoying sushi and again just hanging out with no expectations. The thing about making or growing friendships after a traumatic event is that they don’t know who you were before so they can’t see how you’ve changed. No pressure to be the carefree people we were before.

After our visit with our friends it was time to head down to the keys. We spent a night in Key Largo where I got David on a paddleboard and we had a brief visit from a manatee. The place we stayed was a neat little resort with our own little bungalow right on the beach. We had dinner on the water, I of course got my run in the next morning, and our entire stay was peaceful.

Finally it was time to head to our final destination, Key West. The drive was easy and while we had a great trip until then, it was nice to know we were going to stay put for a few days. There was a stark difference between Key Largo and Key West, with Key West bustling with much more activity, especially in the downtown area. We did all the touristy things; the southernmost point of course (David made me wait in line for a picture, I would have been happy taking a picture at the southernmost bar) and next to that was a menorah so we decided to take a picture as the southernmost Jews as well, the butterfly conservatory where I had a friend land on my head, sign from Ariella? It did land where a unicorn horn would be…, Hemingway’s house with the many 6-toed cats, Truman’s Little White House, and of course meandering along Duval St.

We were certainly not idle in Key West. I continued to get in my runs which were so nice to do along the water with flat terrain. It was hot, even early in the morning, but it was great to not have to think about what to wear or layer up and I could just enjoy the lovely surroundings. We went kayaking through the mangroves one day where we saw manatees, nurse sharks, and lots of jellyfish, and spent hours biking around the island another. We saw a beautiful sunset with three birds (another sign from Ariella) and took a ghost tour where we learned about the darker side of the island’s history.

Though we kept busy we also were able to relax by the pool and just enjoy the calm. That’s not to say there was no sadness this trip. Though this was not a place we had been before it was easy to imagine Ariella there with us. We would have spent hours in Hemingway’s House to see all the cats. She would have stopped to pet every dog that passed by. She would have been on the paddleboard and kayak and ridden her bike alongside us (who am I kidding, she would have left me in the dust on the bike-that kid was fearless). She would have been in awe at the butterfly conservatory and the ghost tour would have been her idea. Watching other families have amazing vacations feels like a sucker punch right in the gut. This vacation was proof that joy can exist with sadness and pain but those moments of happiness are fleeting and the pain often overrides.

Our trip home was a clusterfuck from the moment we arrived at the Key West airport. The security line was the length of the airport, the departure board wasn’t updated regularly, and I don’t think a single flight took off on time. The waiting area was standing room only and barely even that. We were cutting it close for our connection but would have made it had they been able to get the jetway to the plane and open the door in a timely manner (took at least 15 minutes after we arrived at the gate). We sprinted to our gate with ~10 minutes until departure (reinforcing that sprinting and distance running are two very different beasts and I am not a sprinter) to find the plane still there but the gate closed. We were both furious because we were on the ground while the flight was still boarding and there were 5 of us trying to make that flight. They should have held the plane. Anyway, they didn’t and fortunately we were able to get on a flight a couple hours later. We made some friends that had also missed the connection and had some food and drinks in the bar. Ultimately I think missing our flight may have been another sign from Ariella. While in the airport in North Carolina I texted a friend that we met at our bereaved parents retreats that we have gotten close to. They live in North Carolina but I knew they had been away as well. I was curious if they were still on vacation and it turns out they had just landed when I texted! Not only that they were deboarding at a gate right by ours. So we got to have a lovely, albeit brief reunion in the airport. Most of the vacation it was nice to be just us, not the bereaved parents. But there were times I wanted to shout “MY CHILD IS DEAD!” It is just so surreal to do “normal” things with others having no idea of the turmoil inside. So seeing our friends, this beautiful family in the airport, gave me that brief moment of being with someone who just knows and who feels the same, without having to talk about it. So maybe I needed that and maybe that’s why we missed our connection (sorry to the others who missed that flight!). We left with plans for a weekend together in the near future and then finally made our way home.

This was a much needed getaway and did both of us a world of good. The pain doesn’t go away just because our location changes but being out of normal routine in a place that doesn’t have memories tied to it is certainly a refreshing change.

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Just Run

7:00 Saturday morning. Still dark with just enough light at the horizon to hint at the sun beginning to rise. Gathering with the running group to prepare for our scheduled 10-mile run. I don’t really know anyone in the group yet but chat with others while waiting to begin the run. As we start off I have no idea of anyone’s pace, whether I will be running with or near anyone. But it doesn’t matter. The camaraderie in knowing we are all there for the same purpose holds me accountable. We are running in an area I have never run before. The sky is beginning to lighten and we are surrounded by trees. It’s cool and overcast, the perfect running weather.

Runners are running various distances on this out and back course. We start as a group heading down the steep hill and quickly settle into our personal paces. I found myself alone much of the time on this run but not really. Plenty of other runners and walkers and even a couple of dogs. There were runners ahead and behind and mostly I just focused on the beauty of the world around me. The course may have been out and back but there was nothing ordinary about it. As I was running along the curvy road up and down the gigantic hills I couldn’t help but notice the splendor of the trees, the peacefulness of the reservoir, and the stillness. Much needed respite from the chaos of the world. On this run I was listening to my Peloton playlist (when on the bike you can “like” songs and they will then be put in a playlist on Spotify). The music was quite random, ranging from pop to rock, to 90s hip hop, to punk, to new wave, to Broadway, to classical. I love running to classical music, especially on long, easy runs. The classical songs that played on my run served as the perfect soundtrack to running in my picturesque surroundings. The music allowed me to run without distraction and just enjoy being in the moment.

The course was challenging but flying down those steep hills brought some joy. Memories of being a child with no limitations and no fear. Doing everything at top speed with no fear of falling. Running fast downhill brought a sense of freedom and flight, like I was temporarily escaping the pain and pressures on Earth. The moments were brief but exhilarating. Of course after every downhill there was a steep uphill, but oh what a sense of accomplishment as I crested the top and got to soar once again.

It felt great to gather with the others after the run and just share some of the experience, knowing that while we all have the same goal (to run a marathon) ultimately we are there for different reasons. And for now this is the place where I am just “me”. Not the bereaved mother, not the person wearing a mask pretending all is fine, but someone just there to run. Maybe my story will come out later, maybe not. In the meantime, I am going to just run.

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Retreat (Part 3)

This past weekend was bereaved parents retreat part 2 (welI really part 3, since David and I had been to two prior, but this was supposed to be part 2 of our most recent retreat this past August). I wasn’t sure I was going to blog about this past weekend because the retreat didn’t go as anticipated and I don’t want to upset anyone. When we met in August, so much time was spent sharing our stories that we didn’t have any time for workshops and to talk about specific topics. Many of us expressed that we would have liked more time for those kinds of things and so our incredible host invited us to continue the discussion at another retreat. My dissatisfaction with the weekend is not at all the fault of our host as she also was disappointed to hear how it was going for those of us who had been there in August and did everything she could to help us get the most out of it. If you are reading this, I want you to know that I appreciate so much being invited back and am grateful for the opportunity to once again be in a place where we could just be raw and authentic without judgment. Though it wasn’t as expected and not what we came for, there were many beautiful poignant, and meaningful moments that carried me through.

We headed down on my birthday. I don’t really acknowledge my birthday, don’t feel like I have much to celebrate other than it’s one year closer to being reunited with Ariella. I typically ask for signs from Ariella on my birthday but even forgot to do that. At the end of the day I was feeling bummed that I had not received a sign from her, but then I realized two things happened that could be construed as signs (as much as I look for signs I am still skeptical). The first was that a friend asked me if I gave Ariella my middle name (Joy) because she saw a sign at a restaurant that said “Ariella Joy”. That isn’t her middle name but the fact that it is mine and that Ariella is not a common name, prompted my friend to text me, so it could have been Ariella saying I’m here on your birthday. The second event was on the plane. Never on a single flight that I have been on has the flight crew asked if it was anyone’s birthday. The one time it occurred it happened to be my birthday (plus two others on the plane). So an entire plane of people sang “Happy Birthday” to us, with one person singing the cha cha chas, which Ariella always did as well. Ariella hated when people sang to her but loved it when it was for others (she told a restaurant that it was her cousin’s birthday so they would sing to him even though it wasn’t actually his birthday) so getting an entire plane to sing would be up her alley. And though not a sign from Ariella, I received a lovely, thoughtful gift from a friend at the retreat which both made me smile and brought tears to my eyes. A beautiful reminder that we are all here for each other for the hard times and the celebratory moments that are tinged with pain.

So the retreat. I’m not going to go into significant depth here. There is a sense of liberation when amongst a group of people with shared grief and experiences. Freedom from pretending to be okay, freedom from hiding our pain, freedom from worrying how your own grief will affect others, freedom from judgment. As soon as we were with the others it felt like instead of being suffocated by grief, it was shrouding all of us, together. Still there but a little lighter since it was spread more thin. There is relief in being able to share that burden. This coming together was ultimately what this weekend was about so in the end, it was worthwhile and meaningful, even if it took a bit to get there.

Those of us who had been at the retreat in August were expecting more conversation and workshops or breakout sessions. There is so much power in sharing our grief stories but it is also very emotionally taxing. While some weight is lifted when sharing your own story, that happens because everyone else begins taking on that grief, sharing in the burden. And many stories mirror our own, triggering the memories of our hardest times. Sending me right back to the hospital room. The tubes and wires. The beeping of the machines. Ariella’s pain and fear. Her last breaths. There is value and purpose in sharing stories, but we had done this before. We were expecting to discuss topics such as grieving differently from your spouse, changing roles, new identities, finding purpose, getting coping skills. We were looking for facilitated discussion with specific focus. And unfortunately for us, that isn’t what we got. I do not by any means want to take away from the experience the others had in sharing their stories. They hadn’t done this before and it is so important to be able to share without judgment, without interruption, to just say everything you need to say. With this retreat there were basically two groups, both with people who knew each other in some manner but one group who had done this before and one who hadn’t. That makes it difficult to make full group activities meaningful for everyone.

One of the planned activities was making a craft to represent our child and then sharing with the group. Crafts are not my thing and this was something I was not comfortable doing. Some others also chose not to do this so we were able to take that time to facilitate our own discussions. And this is what made the weekend so powerful for me. This wasn’t just conversation, it was sharing our thoughts or feelings on very specific topics and giving advice if asked, or just listening if not. It was understanding that we are not alone, not just in the shared trauma of our children dying, but in ways that we react and live and avoid and hide and cope and survive. The pain bereaved parents endure is scary. The dark, dark feelings are terrifying and knowing that others have felt the same and have come out of it allows us to have those feelings while reassuring ourselves that they won’t last forever, we will survive them. Our host encouraged us to do what we needed to get the benefit of the weekend, so we were able to talk without guilt and could just take the time to make the weekend meaningful for us. In those discussions bonds and lifetime friendships were strengthened.

During our discussion one of the moms said she looks for “micro-therapeutic moments.” Basically finding those moments or events, no matter how tiny, that are helping us to move forward. I am doing things to help me find some gladness and purpose, but I was never looking at them like that. Seeing them in a new light, to understand that they aren’t just keeping me busy but are helping me to find new meaning and grow as an individual and as part of a couple. Reminding myself that it’s okay to see beauty amongst pain, that it’s okay to not let myself suffer.

I was unsettled by the assumption of Christianity in this retreat (not by the host but by the organization facilitating the activities), in some of the activities and in some of the gifts we received. There are many bereaved parents that find comfort in religion (whether it’s Christianity or something else) and sometimes I am jealous of that faith. Maybe having such strong convictions would bring me some comfort and peace. There are others who are now very angry with G-d and are trying to reconcile that anger with their religious beliefs. I pretty much have given up religion since Ariella died. I find no comfort in it, and instead have a lot of anger. And I’m Jewish. So getting gifts that talk about Jesus and G-d and have Christian prayers really rubbed me the wrong way. This was not a faith-based retreat and not everyone is Christian. Having resources available for those who wanted it or having a specific breakout sessions to discuss religion and grief would be a nice way to incorporate religion without assumption. I did not for a second feel like it was being pushed on me or that I was being preached to, but in a retreat that is supposed to be for everyone I did not appreciate the assumption that everyone there was Christian.

I am glad we went to the retreat but it will likely be our last one for a while. My favorite moments were our self-facilitated breakout session and then just the moments when we were hanging out and talking about nothing in particular. I felt a little lighter when we got home knowing this wouldn’t be the last time I see some of these people and knowing that I can send a quick text to someone who “gets it” when I’m feeling particularly down. In the end I was able to share without judgement, remove the mask, and find some comfort.

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Chicago Here I Come!

This will be a short post but I think important to note. I haven’t blogged about many of the positives that have happened, but in all honesty I feel like not much great has happened for me since Ariella died. Life has had its ups and downs but since Ariella died it has just been so many more downs than ups. With our non-fruitful efforts to have another child and our dog dying and struggles at work (for both of us) there hasn’t been so much to cheer for. Things just haven’t been going my way. So I want to share when they do. May not seem like big things but for me they are. It’s these tiny things that make life bearable, that give me something to look forward to.

First, David managed to score tickets for the Foo Fighters contest in May. And not on the lawn, but actual seats. I haven’t been to a concert in a long time and I have to really love a group for me to spend the money and deal with the hassle. Tickets don’t go on sale to the public until tomorrow but David got a presale code and was able to secure tickets on Tuesday (one day after I saw that they would be in town).

Second, this just happened;

I entered thinking there was little chance I would get in. I have been selected for every race that I have entered by lottery (3 times prior to this) and thought it wouldn’t happen again. But it did! Not only is this supposed to be such a fun and fast marathon, it will continue to give me something to look forward to and a purpose, something to work for. I feel more grounded when I have something to achieve. I don’t feel quite as aimless. So Chicago, here I come (in October)!

That’s really it for the moment. I haven’t experienced many positives since Ariella died so I want to note them when I do. Kind of a reminder that with the pain there can be moments of gladness.