Happy Heavenly Birthday. Yesterday you should have turned 15. It’s hard to believe that I could have a 15 year child. And I do. I have you even though I no longer physically have you. You are with me, and have been for 15 years. You will never leave me and yet you are missing from me. Each year now on your birthday I try to imagine how we would celebrate and what you would want. And each year it gets harder and harder to picture. And that breaks my heart even more. I no longer know what your passions would be, your dreams or goals. I don’t know how you would dress, how you would wear your hair. I don’t know if you would still be dancing or if you would have picked up a new hobby or sport. I used to know almost everything about you and loved it when you surprised me with something new. When I picture you it’s as an 11-year old girl, not as a teenager who would be on the verge of learning to drive, going to dances with friends, dating. Your friends are growing up and I hate that they are leaving you behind. To be clear, they are not forgetting you. They love and miss you and are keeping you alive through Ari’s Bears. But it’s not fair and it will never be fair that you don’t get to experience this life. How much you will miss out on. You were going to take the world by storm and you did, but you had so much left to do. I wish I could know you now, and in 10 years, 20 years, for my entire life. What I do know is that no matter what you would have continued to be an amazing, spunky, generous, kind, loving, goofy person who brought joy to all who knew you. I hope you partied it up for your birthday with your too many young friends that have joined you and of course Pop-Pop and I’m sure you are celebrating his birthday today. Give him a birthday hug from me. I love you to the moon and back infinity times and will miss you every second that I am alive.
You would think February through May would be the toughest time of year for me and it certainly isn’t an easy or fun time for me, but fall is harder. Fall was my favorite time of year. Fall was Ariella’s favorite time of year. Fall was the time for family. Apple picking, pumpkin picking, hayrides. Ariella’s birthday. My father’s birthday. The crisp air, the bright colors, the new beginnings. New school year, fresh starts, cool evenings, and the beginning of boots and sweater weather. Fall was comforting, like a warm blanket warding off the chill. Now it just mocks me, taunts me with what I no longer have. The quiet has replaced the laughter, the daily grind of just trying to survive has replaced the pranks, avoiding trick-or-treaters has replaced excited costume preparations, and while I still enjoy the fall weather and colors I miss everything else we used to do so much that it still physically hurts when I think about it. Fall is also when something was first wrong with Ariella but none of us had any idea how serious it would be. At that time Ariella had begun losing weight. We were working with the pediatrician to determine the cause but all her labs were coming back normal. Ariella had also been complaining of pain in her leg but it was off and on and an x-ray at the time showed nothing serious. She was given crutches but used them sporadically. She had them the last time we went apple picking, sometimes using them and sometimes just holding them and walking without any problems whatsoever. What if? What if we took that injury more seriously? What if we went for more follow-ups? What if we told her pediatrician about the leg pain? Would he have connected that to the weight loss and explored further? What if she started treatment sooner? What if we started treatment then instead of months later and maybe the tiny cancer cells wouldn’t have broken off and removing the tumor would have removed all the cancer? What if, what if, what if? Fall brings me back to all the things we could have done differently. I know this is illogical. I know hindsight is 20/20 and maybe none of that would have made any difference. But we will never know.
Last weekend we again went to CureFest, a childhood cancer rally. The first year we went was with Ariella, in 2018. She was in treatment for the second time and we were optimistic. You can’t lose hope. Hope is what carries you through. And CureFest for most is a time of hope and advocacy and seeing the possibilities. But for bereaved parents it’s different. The hope is gone. The only thing we wish for we can’t have. It’s important to advocate and make our voices heard so other children and families don’t have to go through it. Childhood cancer research is grossly underfunded and without all our voices it will continue to be so. But still. It’s still too late for our children and I would be lying if I said that I didn’t harbor jealousy, resentment, and bitterness. CureFest is very tough for me but I also plan to keep going. Anything we can do to provide even a little bit of comfort and joy to the children makes it worth it. And judging by the smiles that day and how busy we were, we were able to make many kids happy that evening. But even more valuable to me is getting to see other families we have met along the way. Especially the other bereaved parents. Because there is nothing like just being with others who understand.
I’m trying to keep busy and maybe even change the meaning of fall for me a bit. Trying to bring back some of the positive connotations so I don’t feel like I’m drowning. I’m winding down my training for the marathon which is good because my leg still isn’t feeling perfect. Nothing serious but not being able to give it as much time to rest has been a challenge. Fall is my favorite time to run so not being able to run as often as I would like is also difficult. But I am looking forward to the marathon and then exploring new opportunities, like becoming a run coach. I say if I ever were to change my job (which I’m not, I love what I do), I would go into something fitness related. Being a run coach would allow me that but also continue doing what I do. But I need to do something. Something meaningful, something with purpose, outside of my day job. I feel lost. I haven’t found my new identity, other than bereaved mother, and I want to be more than that. I just haven’t figured out how. Because no matter what I do, that person is in me, is me, even if those around me don’t realize it. I still find it to be such a strange dichotomy, suffering this terrible loss and being in significant pain every day, but also going about my normal life and even laughing and having fun. It shouldn’t make sense. And yet. Life goes on.
I still pay attention to signs everywhere, especially when times are especially tough. In addition to this rainbow, the name “Ari” was an answer in my crossword puzzle yesterday.
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.
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.
Today is a shit day. It shouldn’t be. It should be a celebration of Ariella turning 14. It used to be the happiest day. Because it is the day I became a mom for the first, and only, time. It’s hard to believe that I could be the parent of a 14 year old, of a high schooler. I see everyone else with their perfect children and perfect families celebrating the new school year, being another year older, celebrating all the milestones. And I am left with remembering Ariella at her last birthday, her 11th birthday. And it’s shit. There is a world of difference between 11 and 14 so I honestly cannot begin to imagine what she would want to do to celebrate, what she would want as a gift, what she would wear. I knew her so well and now I don’t know what she would be like at 14. The only thing I do know is that if they were both here, we would have some kind of celebration together with my father. His birthday is tomorrow and he loved his birthday and he loved (almost) sharing it with Ariella. So tomorrow is a shit day too.
On top of all of this Sherman, my dog, the reason I got up in the morning in the months after Ariella died, the reason I set foot outside, the one who came to our home with a big giant bear and tons of unconditional love to give, is not doing well at all. There is a very strong possibility that we will lose Sherman and it is devastating. When we get pets we expect to outlive them. But we don’t expect to lose them at just 4 years old after only having them for just over 2 years (unless you are a saint and purposely adopt older or sick pets).
I am tired of being shit on by the universe. You’d think after suffering the worst loss a parent can experience you would get a free ride the rest of your life. But of course the universe doesn’t work that way. So here we are. Dad died in February 2016 (we of course expect our parents to die before us but he died younger than he should have), Ariella diagnosed with cancer January/February 2017, relapsed 2018, died 2019. Unable to become parents again despite exploring many avenues for parenthood for two years now. And now facing the loss of our dog who helped us through so much of the initial pain. What. The. Fuck?!
I am really at a loss as to how to even deal with all of this right now. Today (as many days) I threw on my running shoes and did some running. Back on the subject of shoes, my running shoes have carried me many, many miles and are better than any therapist. I just wish they could whisk me away from this life and into a better one. One without all of this pain and heartache. One without this black cloud hanging over me.
One year ago at this time, we were a family of three attending CureFest, a powerful pediatric cancer awareness and advocacy event. One year ago Ariella was wearing gold beads signifying her fighter status . She said she couldn’t wait until next year when she would be able to wear the silver beads signifying survivor/no longer in treatment status. This year we were a family of two, wearing white beads signifying that we are bereaved parents.
One year ago we were watching touching dance performances, many in honor of or in memory of a cancer warrior. Ariella’s leg was still healing so she was not ready to perform but she had big plans to perform the next year; a group with her dance studio, a solo, and a duet with her friend Ava choreographed by Ava’s sister Emma (Not sure how that was going to go. Ariella was talented but Ava is leagues beyond, but I know Emma would have made something work. I am heartbroken that we never got to see this come to fruition). She was also supposed to speak. Instead, I spoke for Ariella. This year Ariella was on stage again, but not how any of us imagined. This is how the dance should have looked.
Instead it looked like this
The parts where Ariella was on dancing are now empty. There is no one there. She also would have dazzled everyone with a tap dance.
One year ago we started getting the word out for Ari’s Bears. We had a tent on the mall and gave out bears and information. Ariella was so proud to be there.
This year we had a table but we were missing our founder. The one who started it all. The reason Ari’s Bears is here. She was the one who wanted to get a table at CureFest. She was the one who wanted to expand Ari’s Bears. And she never got the chance to see it happen. This year my mom and aunt came to support us and Ariella was with us, but not in the way we wanted. Her picture on the angel wall just happened to be right across from our table so we got to see her all day long.
We did give out bears, to all the fighters, survivors, siblings, and bereaved parents. But Ariella should have been the one handing them out, not us.
One year ago we reunited with friends met the month before.
This year we were reunited at Ariella’s funeral when they got off a plane to go home and instead drove from NY to us, leaving their luggage behind. This year they are our family, not just friends. Ava spoke about the irony of cancer. You lose family and friends because of cancer. They aren’t there for you. But cancer connects people as well. Cancer brought Ava and Ariella together. And then stole Ariella from Ava. Instead of dancing together this year, Ava danced for Ariella.
One year ago Ariella met Tom and Lauren and signed up to be honored at mile 62 for their Bigfoot 200 Endurance Run just this August
This year Lauren and Tom crushed the run with Tom finishing for the first time. Instead of the mile being in honor of Ariella, it was in memory of.
One year ago Ariella was honoring children who have died from cancer at the candlelight vigil and she was using her voice to advocate for pediatric cancer awareness and research funds.
This year we said her name at the vigil. And we had to be her voice and the voice for so many others. Way too many others.
One year ago Ariella was standing on stage with the other fighters and survivors.
This year David and I stood on stage as bereaved parents.
One year ago Ariella’s picture was on the tribute wall as a survivor/fighter.
This year she was on the tribute wall for the angels.
One year ago, though Ariella was in treatment, we had so much hope and optimism for the future. One year later we are shattered, broken, feeling hopeless, empty and lost. So much can change in a year.
I was not looking forward to CureFest this year. I am so tired of it all. Of cancer and stats and death. CureFest is a time of hope and optimism and I am feeling anything but hopeful and optimistic. At CureFest there is so much positive to be found. Cancer fighters and survivors everywhere, overcoming the odds. Young advocates leading the charge to spread awareness. My child had a voice (a very, very, loud voice) but she is no longer here to use it. It crushes me to be around all these kids. I am happy for those that survive. But I am also jealous. Why not my kid? Why was she one who didn’t make it? She deserved to live as much as anyone else. All of the kids deserve to live. None of them deserve to have cancer whether they survive or not. And it devastates me to know that this time next year there will be more families attending like us, minus one family member.
Here’s the thing, though. Before we were thrust into the unfathomable, childhood cancer did not cross my mind. No one I knew had been touched. I was blissfully unaware. And this is not okay. It is hard to watch. No one wants to think it will be their child. It doesn’t even occur to most people that childhood cancer is something to worry about possibly happening. Even when Ariella lost an alarming amount of weight, I did not think cancer. Especially when blood work came back fine. There is more to childhood cancer than Leukemia but they are “rare”. People aren’t made aware, doctors don’t recognize symptoms and each day a busload of kids gets diagnosed. People look away. It doesn’t escape me that only a handful of my Facebook friends and followers actually share my cancer posts. The people that see them are usually the ones that are already aware. It’s preaching to the choir. And this is a problem. Because posts aren’t reaching the people who need to see them. Because until the public is outraged and politicians are made to listen nothing will change. We had no idea until we were in the thick of it that September is gold for childhood cancer. Everyone is well aware of pink in October. When will childhood cancers get the same recognition? Until they do the research dollars will not be there and children will continue to die.
Those who don’t share, think long and hard about why you don’t. Isn’t this important? What if it’s your child, or grandchild, or niece or nephew? Don’t you want the research? Don’t you want a cure? You may think your posts may not make a difference. But sharing on social media can be exponential. The more it’s shared the more people are aware and the more politicians will have to take notice. And maybe it will help someone get diagnosed more quickly as well. It is too late for my kid but I feel a responsibility to continue the awareness. Right now it feels like a burden. The last thing I want to do right now is think about cancer, actively talk about it, see all the posts. But how can I ask others to spread awareness if I don’t. Ariella’s death, all these deaths should not be in vain and yet it continues to happen. Every. Single. Day.
I also had to go to CureFest for Ariella. Her legacy is Ari’s Bears. Her mission was to expand Ari’s Bears to reach as many kids as possible. The way to do this is by being present, showing up, getting our name out there. As hard as it is, this is what she would want. And knowing Ariella, if I didn’t attend, if I didn’t speak, if I didn’t give out bears, she would find a way to make me pay.
In the end, I am glad I went. Many, many people approached our table and told us they remembered Ariella from last year. One little girl wanted to give her old doll clothes to “the girl who gave her the bear” to dress more bears. Many of the children/teens mentioned the bear they got from Ariella, whether it was at CureFest, at the hospital, or in the mail. I got to see first hand the impact Ariella had on other kids fighting cancer. I was reassured that she truly will never be forgotten, that her legacy will live on. We reunited with many friends made along the way and met in person people we only knew online but unfortunately know all too well. We got to hear stories of other amazing children taken way too soon and got to share in the victories of children still in the fight, whether they are years in remission or still in treatment.
I mentioned when I spoke that cancer does not make a child strong. They don’t all of a sudden have superhero strength to tolerate toxic treatments and a life threatening illness. They tolerate it because they have no other choice. But these kids, and siblings, are indeed strong. They are strong, not because they have cancer, but because of how they choose to live in spite of having cancer. These kids, they suffer, and they cry, and just want to be normal kids. But they also smile, and they play, and they laugh. They participate in their activities when they can, they go to school when they can, they participate in life as much as they can. They are sad when they have to miss out but they live life to the fullest at every opportunity. They don’t dwell on cancer and they are hopeful and they advocate and they want to help others. This is strength. Those are all choices. Cancer is not a choice. Treatment is not a choice. “Living” in spite of that, is a choice. And every child I have met with cancer lives the same way.
I take my inspiration from these kids, Ariella included. I blogged before about not wanting to be called strong just because I get through each day without my daughter. That isn’t strength. That is survival. But this weekend was the first time I have actually felt strong(er than I have which wasn’t strong at all) since Ariella died. I chose to go to CureFest. I chose to get on stage and speak for Ariella. And I chose to share her story and give bears to all the kids who still get to live. I chose to be around countless triggers because Ariella would have done the same. She did the same. She gave bears to other kids even though she had cancer. She went to the dance studio and competitions even though she couldn’t dance. She went to CureFest as a fighter, wishing she was one of the many survivors. She stood up in front of people and took off her wig and told her story. She is my inspiration and she is why I ultimately made the decision to attend.
You want to have your heart broken, go to CureFest or any other pediatric cancer activity and event. And if you want your heart uplifted, to be filled with promise and hope, go to CureFest or any other pediatric cancer activity or event.
All these words. These thoughts and feelings and emotions. Words I have written over the past few months. Words that cannot begin to describe the anguish, heartache, and despair from which I am suffering. Oh how I wish they were just words. I wish this was just a story I am telling. No one else’s story in particular because I would not wish this nightmare on anybody. But just a work of fiction.
Devastatingly this is no tale. This is real life. My life. My life that feels surreal now. This can’t be my life, can it? Parents don’t bury their children. Children don’t die. But they do. They are not supposed to, but the harsh reality is that children die every day and parents grieve the loss for a lifetime.
I feel like I am living in two separate realities. There is the one, the horrific life in which my daughter is dead and she is all I think about, day and night. I think about the memories we have made and the memories we never get to have. I think about her smile, her laugh, and her spirit and cry until there are no more tears left. And there is the other life, still horrific, and my daughter is still dead and she is still all I think about. But in this life I have to go on living. Against my will I have to live life. My heart continues to pump and my lungs continue to breathe. My body begs for food and water. The bills have to be paid. I must go to work. In a world where everything seems meaningless, where life seems to no longer have a purpose, I must “move on.”
It is next to impossible to reconcile these two worlds. How can I go anywhere, interact with anyone, converse, like everything is okay? It is not okay. None of this is okay. And yet I am forced to live like it is. No matter where I am, who I am with, what I am doing, this refrain is repeating over and over in my head. Ariella is dead. Ariella is dead. None of this matters because she is dead. People who don’t know me, who don’t know I once had a daughter and now I do not, cannot begin to guess the turmoil brewing in me. I live in two worlds. One an unspeakable nightmare and the other an unspeakable nightmare in which I pretend it isnt.
This life of mine feels like an illusion. Or an alternate reality. Going about normal business, making conversation, even getting dressed each day just feels wrong. How can I do normal things when life is anything but? How do I find it in me to care about anything anymore? On the outside I look like any person living life but on the inside the heartache and sadness and anger are bubbling inside me, threatening to boil over at any time, scalding me in the process.
I cannot begin to guess how my story will continue to unfold. I do know that sorrow, pain, and anguish will be a consistent theme. I viewed Ariella’s battle with cancer in chapters, because with cancer there is no end until you reach to reach the ultimate end. The first chapter was her first line of treatment. Second chapter was off treatment and third chapter began with her relapse and ended with her death. My story is broken up into two chapters. Before she died and after. This second chapter will cover the rest of my lifetime. When the world dropped out from under me, when everything changed, when life can no longer be carefree and just happy. No matter what happens in the future chapter 2 will be imbued with sadness and longing.
“You are so strong.” “You are inspiring.” “I don’t know how you do it.” “I wouldn’t be able to go on if my child died.” These are statements often heard by bereaved parents. And I hate them. I am not strong. Well, no stronger than anyone else. Burying a child does not automatically make one stronger. I go on every day because I have no other choice. Living each day without my child does not make me strong. I am living against my will, I did not make the choice to do so. My heart continues to pump, my lungs continue to breathe. My will has nothing to do with it. I don’t want to be admired. I am not someone to aspire to live up to. I am just here, trying to survive each day. Those who say they could not go on if their child died. Well tell, me what would you do about it? Because short of suicide you too would not have a choice in the matter. Don’t get me wrong. Suicidal thoughts are extremely common in the bereaved parent community. Not necessarily ideations, but wishing they were dead. Wishing they would go to sleep and not wake up. Wishing for a terminal illness, aneurysm, freak accident, anything to escape this life. I cannot speak for all bereaved parents but I do know many, many that would welcome death.
I am not strong. I go through the motions. I do what I have to do. I haven’t worked since Ariella died in May. I was fortunate to be able to take off the rest of the school year. Tomorrow I go back. Maybe some think that makes me strong. But it doesn’t. I don’t want to go back. Going back to work feels like I’m moving on with my life. That there are things out there more important than Ariella. But I’m not going back to move forward. I’m going back to work because again I have no choice. Bills have to be paid. Food has to be bought. I work in 5 different schools. That is going to be like 5 first days back at work, plus my orientation day. The thought of this terrifies me. Because I am not strong. Because I cannot hold back my tears. Because all I want to do is be at home with minimal interaction with the outside world.
I am already exhausted and overwhelmed. Everything just feels wrong. My whole life feels wrong now. I don’t know where I belong now, where I fit in. And I have no desire to figure it out. I don’t want to find new roles and identities. All I want is my job as Mom and I can’t have that.
