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.
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.
