dance - Living with Grief

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.

I go to the gym every morning before work. I pack my bag the night before. I grab my outfit and shoes and toss them in the bag, not paying too much attention. This morning when I got dressed at the gym I realized I brought the shoes that I wore for Ariella’s funeral. Shoes I haven’t worn since then. Shoes that still have the mud on them from the cemetery. Mud I could not bring myself to clean off this morning. I don’t know why, I have parted with many of Ariella’s belongings, but I could not part with the mud. When I wasn’t working I visited Ariella at the cemetery quite a bit. I don’t have as much opportunity to get there now. Even though it’s just her body there, not her spirit, I feel the most connected to her when I talk to her at her grave site. I have to drag myself away after my visits. I never want to leave her. The mud on my shoes today was that connection. I didn’t think a pair of shoes could bring me to my knees.

But that’s not necessarily true. As mentioned, I have parted with most of Ariella’s belongings. We kept special objects but clothes and things of little importance were donated. But two pairs of her shoes. Ariella did not care much about fashion. She was happiest in sweats and an oversized hoodie. Shoes weren’t a priority for her at all, but she had to have Ugg boots and black Chuck Taylors. The Chucks were actually to wear with a party dress. When I was going through Ariella’s things, I pulled those shoes out as well, but ended up putting them back because they belong in her closet. I often will go in her room and just sit for a minute or two. Not long but seeing her shoes in the closet for some reason gives me some comfort. But it has to be those shoes, because those were actually important to her (as important as shoes can be). They exude her personality and I like having them around. But it is also gut-wrenching to see those shoes there. Just waiting for her feet, never to be worn again. Desolate, and lonely. Without a purpose. Like me.

There is one other pair of shoes that I wish I had, but they are in their right place, buried with Ariella. That pair of shoes is her custom tap shoes. A special gift from her dance studio when Ariella started dancing in earnest again. She loved those shoes so much and practiced tapping all the time, just so she could wear them. As much as the constant tapping drove me crazy, I miss it so much. Would give anything to have Ariella tapping all over the house again. She was so proud when she began tapping again. She couldn’t wait to perform. She dazzled on stage and had the shoes to match. Ariella worked hard for those shoes and she earned them. She deserved to have them with her.

I still have her littlest shoes; her first pair, her first ballet slippers, and her first tap shoes. So tiny, filled with the feet of someone with so much promise and potential. Potential we could never imagine would go unfulfilled. When you look at shoes so small, and you look at the child wearing them, you envision the future. You wonder if they will continue dancing or if they will trade those dancing shoes for soccer cleats, or running shoes. You never think that one day the feet will stop growing, not because of age, but because of death. You never think that this tiny person’s life will be cut short. In fact you often lament them growing up so fast. They outgrew another pair of shoes, another pair of pants. Stop growing up you want to say. You want to hold on to them when they are little, keep them young forever. Until they actually are forever young.

When Ariella was in the ICU and we had no idea how bad it would get, I had asked her what she would want, or what we would do to celebrate when she finally got out of there. And with all the hell she had been through and was still going through, all she said she wanted was a pair of shoes. A pair of slides. I want to keep buying shoes. I want to buy her all the shoes. I want to be sad because she is growing up, increasing her independence, not because she never gets to grow up. I hate this life so much. I want her and all her glorious mess back. I want the pile of shoes littering her closet floor, not just the pairs I kept. I just don’t want to do this anymore.