Ariella’s friends are at a Halloween party tonight. Every year her dance company has a Halloween party, sometimes it’s at the dance studio but other times it had been at her dance teacher’s house. The parties at her teacher’s house were parent friendly, not just for the kids. They are elaborate. Lots of good food and fun games, a haunted woods and a campfire. Kids and parents alike have a great time.
This year the party is not just a party, but also a fundraiser for Ari’s Bears. It sounds like a great time with even more games and activities, items for sale, a silent auction, and fireworks to end the night. David and I were supposed to go. We were almost ready to leave the house. But I really did not want to go. So we didn’t.
I feel guilty about not going. After all, this event benefits our foundation. But I have learned over and over that out of necessity a grieving parent is selfish. A grieving parent must put her own needs first. A grieving parent must take care of herself in order to just survive one day to the next. So to protect myself we didn’t go. I would have been happy to see my friends but I do not want to be someplace where Ariella would be, having a great time with her friends, being the loudest one in the room, and just enjoying life. I do not want to see her friends having fun without her. I know they love and miss her but their lives go on. Ariella’s absence does not define their lives like it does mine. Nor should it. But being at the party without her only one thing would be running through my mind the entire night. She should be here. Her absence would be glaring and I just wasn’t up for that. I also wasn’t up for seeing my friends happy and having fun with their children. I don’t begrudge them their happiness but I certainly was not in a party mood. Definitely not up for small talk when all I care about is that Ariella is missing a party for her favorite holiday. I sometimes I feel like the unwanted guest. No one has made me feel that way, but I don’t even want to be around myself. I’m a downer. I have always been quiet and introverted but more so now. I can’t force myself to converse when so often I just don’t care. I know that sounds terrible but all that matters to me anymore is Ariella. Nothing else is important. I also know that I am an uncomfortable reminder of a parent’s worst nightmare. Again, no one has made me feel unwelcome, but I also know I am not the ideal friend anymore. Sometimes I’m up for hanging out but a Halloween party with Ariella’s friends was the last place I wanted to be tonight.
Instead David and I stayed in and I am pretty much doing what I did all day, just laying around without the motivation to even get off the couch. The only difference now is I added a glass of wine. I am not alone and yet feel so lonely. Because no one else can understand. Even those who are in a similar situation. Even David. Just like I can’t fully understand how they are feeling. Because everyone grieves differently. Everyone feels differently. Grieving by nature is a very lonely road and when you feel like your life’s purpose and meaning has been stolen from you there is a lot of uncertainty with how to just live and find new meaning. I just feel so lost.
Ever since Ariella died, no, ever since she was diagnosed with cancer, I have been very angry. Angry that my sweet, innocent girl would have to suffer. Angry that our lives would be shattered. Angry that Ariella felt lousy most of the time, and couldn’t go to school and just be a normal kid. Angry that the treatments she was receiving were decades old and there weren’t any new treatments because childhood cancer receives less than 4% of national research funds. Angry that most of the world didn’t seem to care about our kids. That childhood cancer is said to be rare so not worth the time or money. Angry that we had to live in fear and anxiety that we would lose our baby girl. Angry that being carefree was stolen from Ariella. That she could no longer just enjoy her childhood, imagine growing up, living her life, without fear that her dreams would be cut short.
I was, am, furious still. I am furious with the doctors that recommended bone marrow transplant and I am furious with myself for agreeing to it. I am furious that the treatment that was supposed to save her, killed her and I am furious that the doctors couldn’t save her. I am furious that my baby girl, the innocent in all of this, lost her life at only 11, unable to realize her dreams of going to college, being a nurse, having a family. I am furious that she spent the last 2 months of her life in a hospital bed connected to machines, scared, uncomfortable, downright miserable and I am furious that I didn’t even get to really say goodbye. I am furious that modern medicine couldn’t save my daughter and I am furious that I have no choice but to go on living. I am furious when I hear about anyone else dying, children or adults, because I want it to be me. I am furious that children who very much want to live, die when there are plenty of people in the world (me) who would happily take their place. I am furious at the unfairness of it all. It isn’t fucking fair. I know I sound like a petulant child. Life isn’t fair. That is something we are taught from a young age. But I never thought I would be viewing fairness in illness and life and death.
Until yesterday evening I had not found an outlet for my anger. Writing does not touch the surface of my anger. It helps me express and process my feelings of sadness and despair but doesn’t come close to harnessing and releasing the rage brewing inside me. With the suggestion of a few people I tried a kickboxing class last night. Punching and kicking the bag was especially therapeutic. Nothing else mattered, just my intense focus on beating the shit out of the bag. And it felt damn good. The anger is still there. It won’t ever go away. But I feel like I now have a way of releasing that anger so it doesn’t continuously build up.
There is not a minute that goes by that I don’t have thoughts of my girl and then there are triggers that make the pain even greater, because they sucker punch me when I’m not expecting them. Today I dropped a student off in the classroom where they were playing the game Headbands. That immediately brought me back to the hospital and clinic where we played round after round after round of the game. And those aren’t bad memories. Sure we were in the hospital but we were having fun (well as much fun as you can have on your millionth round of Headbands) and spending time together. When I saw the children playing the game I wanted so badly to be back in the hospital with Ariella playing that game. Boy my perspective has changed. I never thought I would look back to the year of first line treatment as a time I would miss and one day want to return to. But I would give anything, anything, to be back there.
I still think every day, multiple times a day, that I will not get through this. The speed of time is something mentioned often. “Summer flew by”, “I can’t believe it’s almost November”, “The holidays will be here before we know it.” But time does nothing for me but drag and drag. The days are excruciatingly long and I am usually counting down the minutes when I can reasonably go to bed. Each day without Ariella is a lifetime and the thought of 40 or 50 more years of this, of living without the most important part of me, is horrifying. I’ll be honest, when driving I often fantasize about just sharply turning the wheel and driving off the road or crashing into the guardrail at 70 mph, but I would never do it. Mostly because I don’t want to hurt anyone else and be the cause of someone else’s heartbreak. Also, while I am not afraid of dying, I am afraid of pain. There is no out. There is no escaping this agony. And I don’t want to live like this.
I haven’t blogged lately. I’ve been busy. Busy is a double edged sword. Busy keeps my mind distracted, allows me to feel like a normal person. But busy is exhausting. The energy required to get through a day of work, a day of errands, a day of planning events, takes its toll. When busy ends I am trapped with my thoughts, can’t get outside of my own head. All of the thoughts and emotions that were pushed aside, come flooding back as soon as there is idle time.
So many people want to “solve” my grief. But grief is not a problem to be solved. Grief is a state of being, like happiness. No one would view happiness as a problem and grief is just as valid. They want to solve my grief to make them feel better. They are uncomfortable with it. They think that giving the loss meaning, a purpose, will make it okay, will allow me to move on and all will be right in the world. But there is no purpose or meaning that makes any of this worth it. There is nothing, NOTHING worth the cost of a child. And I am comfortable in my grief. This grief will be a lifelong companion. Maybe one day it will take some steps back, won’t be the primary player in my daily life, but it will forever be present and I have already gotten used to being covered in its blanket.
The ones that truly care, don’t try to make me feel better or get rid of the pain. They know they can’t. They don’t spout useless and offensive platitudes and are comfortable just sitting in quiet, or listening when I need to talk about Ariella. I am lucky to have such a good support system. I am lucky that people I barely knew have shown up. I am lucky that people I knew years ago but had since lost touch with take this so personally and feel our loss so deeply. I am lucky that those who have been there more than make up for those who haven’t. They say that in profound loss families are often torn apart but friends and even strangers become family. And this is so true. Some of our family has been wonderful but friends and strangers have more than stepped up to fill the roles of those who haven’t been there. I am no longer allowing myself to waste my energy caring about the ones who disappeared because I have the ones I need.
Day to day life is really hard. I still just can’t care about the minutiae of living. It is all so petty and trivial. None of it matters. It does matter greatly to those who haven’t experienced such profound loss but I can no longer relate. Perspective takes a huge shift and I feel selfish because I just can’t care about stuff that in the grand scheme of things is just not a big deal. Maybe in the immediate aftermath people hugged their kids tighter, vowed not to take their lives for granted, realized what is most important. But I’ve seen that gradually shift, back to complaining about the daily annoyances, not appreciating what they have, wanting more, wanting better. And it’s natural. It’s only human. But while everyone else moves on, gets to worry about the small stuff I only care about the huge, gaping hole left in my life. And there is a huge disconnect, a distance forming that I don’t know if I will ever be able to bridge.
I don’t feel fully present in this life. I feel like I am watching myself going through the motions with a sense of detachment. I do what I have to do to survive. Even in groups of people, I hold back, don’t fully partake. Because most of my thoughts are with Ariella and when I think about her I think about the futility of everything else. And it just doesn’t matter. My biggest fear these days is that I will live a long life. But I feel like I’m living with 1 foot here and 1 foot in Heaven and can’t be fully here. I don’t want to be here.
Today was Yom Kippur. The holiest day of the year in Judaism. A day of atonement. The day our fates are sealed for the following year. It is a day of fasting and a day of prayer. While I was never religious growing up I have fasted on Yom Kippur every year since my Bat Mitzah, and gone to synagogue every year since high school (my family wasn’t observant but Judaism has always been important to me). This year I did neither (well David and I did go to a remembrance ceremony at temple but it wasn’t a service, more on that to come). What is the point? I have prayed and fasted and been a good person and for what? For my life to be destroyed. For my heart to be shattered. My fate was sealed the second Ariella took her last breath. Destined to live the rest of my life in pain and sadness. I am living through the unbearable, the worst nightmare a parent could go through. Whatever fate has in store for me, it cannot be worse than my current hell.
Not only did I not fast and not go to services, I actually went to work today. And I feel like I should feel guilty about that, but I don’t. None of it means anything anymore. I find no comfort in it, only anger. I mentioned a ceremony earlier. Later in the day the rabbi had a ceremony prior to the remembrance service. The remembrance service is in memory of all who have died but the ceremony prior was for those who have lost someone in the past year. We each lit a yahrzeit candle (a candle lit in memory of the dead) and said who we were there for and shared a little bit about them. Most people there with the exception of one other family, were older, with the death of their loved ones as part of the natural order. They felt their losses deeply, their grief was apparent, and yet they were still shocked and saddened when they heard our story, and went out of their way to give us hugs and their condolences. I wish I could say I returned their sentiments but I was so distraught after talking about Ariella that I just couldn’t care about anyone’s loss but our own. It was just so wrong, to be standing there among an older crowd of people who were sharing losses of spouses, parents and grandparents who lived a full life, and us sharing the loss of our 11 year old daughter. I am not sure what I was hoping to find from the ceremony. Maybe some comfort, being able to be in a room and cry with others. Sharing Ariella some more, remembering her. But all it did was reaffirm the unfairness of it all.
Today also marks 5 months without Ariella. All of her favorites are approaching. Halloween, Thanksgiving, Chanukah. I wish I could go to sleep and wake up after the new year. Well really I wish I could go to sleep and just not wake up. I just can’t do this. I don’t think I can do this. I don’t want to do this.
The other day David and I had the daunting task of designing Ariella’s gravestone. Add that to the list of things we never thought we would have to do when we became parents. Here we are, trying to sum up Ariella’s life in just a little bit of space. She may have lived only 11 years but her essence could fill a book. We had to decide what was important enough to be engraved permanently, to be the eternal proof that Ariella existed. But it’s all important. We of course used the relationships daughter, granddaughter, friend. But this was not who she is, or was. Yes, she is those things but she is more than those things. She is not defined by her relationships with others. She isn’t important because she is our daughter. She is important in her own right. She is her own person, with her own identify. A larger than life personality. How can we possibly convey who she really was in just a few words?
I want the world to know Ariella as Ariella. I want the world to know that she was kind and generous, worrying about others even when she wasn’t feeling well herself. I want them to know that she was sweet and loving but had a temper and an attitude. That she mastered the art of the eye roll but also the art of bear hugs. The world should know that she never stopped talking and that she was silly and goofy as could be. She could always make me laugh and always cheer me up. She was fiercely independent but also loved spending time together as a family. I want them to see her spunk. Her sass. Her quirks. The traits that made Ariella unique and special. The characteristics that made her the stunning person she was.
Years from now, what will those who happen to see Ariella’s gravestone think about her? They will be able to tell that she was a child, and a dancer. That she was mischievous. And that she had cancer or some sort of illness. That’s not enough. That is not nearly enough. Those who live full lives get to leave their marks on this world many times over. Yes Ariella left a mark. But she was only just beginning. There are countless people that never got to meet her, never got to know her. People she would have met along the way, during the course of her lifetime. People who would see the truly wonderful person she was. She was robbed. We were robbed. The world was robbed.
It is tragic that in the end, we are all reduced to (hopefully) carefully chosen words permanently etched in the ground, with only memories left to keep us alive. It is more tragic for a child, who had so much living left to do. Who never got to be wife, mother, grandmother. Who missed out on so many opportunities to make an impression, meet someone else to carry their memories. Nothing terrifies a bereaved parent more than the though of their child being forgotten.
I feel sick. A wave of nausea tries to consume me. My head feels like it is being squeezed In a vice, getting tighter and tighter. My heart is pounding like a drum, threatening to burst out of my chest. I can’t stop shaking from my fingers to my toes. There is a lump in my throat. A pit in my stomach. A heavy, suffocating feeling of dread. My eyes begin to water. Sometimes I can hold the tears back. I have learned to fight them. I have to. Can’t be crying at work with my students, waiting in line at the post office, trying to buy groceries without drawing attention. I can get tearful and sometimes it will stop there. But more often if I start to let them go they then pour from my eyes without restraint. Relentless. Once released unable to be tempered. The crying takes over my whole body. Uncontrollable. So you can see why I have to fight the tears. Why I can’t always let them fall.
This is how I feel every time I think about Ariella. Every time. That physical response takes over. Good memories and not so good. Things I remember that she liked and things I see or do that I know she would like. Halloween and fall decorations abound. She loved Halloween. Every trip to the store involved a purchase of another pumpkin or decoration. The other day I ran into Wegmans and they had all sorts of fun painted pumpkins. Ariella would have wanted all of them and then gone home to paint her own. Cue my body to react. Grief is not only mental and emotional. It is a visceral reaction felt way in the depths of the body that nothing else can reach. I did get teary but as I said I learned to push the tears back. Not indefinitely though. I can hold it together as long as I need to (most of the time) but once in a “safe” space it all comes spewing out.
This response. It is caused by immense despair. Oppressive anguish and heartache. Overpowering panic. Panic that I will never see Ariella again. Never be able to kiss her on the head as she walks by. Never feel her arms squeeze me tight in another bear hug. Never again hear her say “I love you Mommy.” I’m not sure why the panic. One usually fears the unknown. I know what my future holds. I know I’m faced with a lifetime of sadness and yearning. I know that whatever happiness I may eventually find will have to coexist with sorrow. I have been through the absolute worst. I shouldn’t be afraid of anything else. I know this is permanent. But actually I haven’t lived through the worst thing imaginable. That would imply the worst is over and that’s not even close. Every day I endure the unfathomable. Every day is the worst day of my life. Because every day I live is a day I live without Ariella. Each time remembering anew that Ariella isn’t here and that this is forever fills me with a terror unlike any other.
I have moments, maybe days even, where I know I look okay. That I seem to be moving forward, living life, functioning. I am keeping busy and I probably look almost normal. Strangers can’t tell the extent of my sadness. Or that I am sad at all. But I am a fraud. Because that face I am putting on for the world does not accurately represent how I am truly doing. I am not doing well. I am so far from okay. Each day is a fresh struggle. A challenge to endure. I am so very tired. Sleep is not as elusive as it once was and yet I don’t wake up feeling rested. And then there are stretches. Two or three nights in a row where I don’t get more than an hour or two of sleep. It catches up.
Living with grief is a contradiction. I want to quietly bury myself deep in my blankets and just sleep forever while at the same time I can’t stay still. I am crawling in my skin, literally trying to refrain from pulling my hair in anguish, wanting to scream at the top of my lungs. I want to be around supportive people but at the same time I don’t want to interact with anyone. I crave connection and I crave solitude. Keeping busy keeps me sane but at the same time I don’t want to do anything. This life seems unendurable and yet I have no other choice but to keep on living. And I hate that.
Twelve years ago today, at 6:00 in the morning, Ariella Paige made her grand entrance into this world. The weather today is actually similar to the weather when we brought her home from the hospital. It was quite hot, too hot even for me to take her for walks in the stroller. Anyway, like everything else she did, she took her time getting here, making her debut a week and a half late. Even taking her time through labor, causing me to end up having a c-section. That day was the happiest of my life. I had always wanted a little girl though I really thought I was having a boy. Ariella filled a part of me that I didn’t know needed to be filled. She completed our family and we were looking forward to a lifetime of happiness. She was perfect and healthy at birth and at that time we never could have imagined the heartbreak to come just less than 12 years later.
Ariella had her whole life ahead of her. She was a precocious child filled with light and exuberance and joy. She wasn’t perfect, not by any means. She was stubborn and had a temper and attitude that could rival any teen. But she was also fiercely independent and a leader among her friends. She didn’t get caught up in drama and was kind to everyone she met. She loved hard, she didn’t hold grudges, and she was generous, compassionate, and sincere. Her spunky and feisty personality is what got her through those two years of hell, never letting cancer stop her.
1st Birthday
By her first birthday Ariella was always on the move and began a lifetime of non-stop talking. Her second birthday brought the start of gymnastics, preschool, and the terrible twos. Though we found the year she was three much more challenging than the year she was two. She was stubborn and had quite the temper, which were traits that she carried to the end.
2nd Birthday Party2nd Birthday
Ariella always loved her birthdays (what child doesn’t). Her love of the fall and animals led to parties on farms and her love of crafts led to painting and crafting parties. But regardless of the theme we always celebrated in some way, as all families do.
Her Pop-Pop’s birthday is the day after Ariella’s and they were always celebrated together with a dinner out.
The last birthday celebrated together, her 8th and his 72nd. Her Pop-Pop died 4 months later8th Birthday
Ariella’s 9th birthday was the last one before everything went to shit. Her leg pain had started by then but we thought it was just an injury. She was super skinny because she had lost an alarming amount of weight and we were trying to figure that out with her pediatrician. Cancer was never a thought, especially when blood work came back normal. Who could have guessed that less than 4 months later our lives would be completely turned upside-down, not for the last time?
Even with all the hell we had been through we did not imagine after diagnosis that Ariella would have only 2 more birthdays. Her 10th birthday started in the hospital but she was discharged early that morning so she got to have a sleep over with her friends that night.
This was the day before her birthday, a party in the hospital room thrown by child life
And finally her 11th birthday. The last one. Even with the relapse we did not imagine she would only have 11 birthdays. She was feeling great most of the time and happy and vibrant. Those who didn’t know her would never have known she was sick. Being true to her fearless self Ariella had an indoor skydiving party.
And then February 26th, 2019. Her bone marrow transplant, often referred to as a re-birthday. Oh how excited and hopeful we were. And I felt it was such a good sign that it was the day after the 3rd anniversary of my father’s death. They had those connections. Their birthdays being 1 day apart, and just having a close relationship. If only. That day is the one birthday of any type I wish we didn’t have. Because that day, the day that was supposed to help her live, is what caused her death.
How? How did she only live 7 months after her 11th birthday? I just don’t understand it. I will never understand it. I still can’t believe this is it. We have to go on without her. We have to wish her happy birthday in Heaven. She should be here. We should get to celebrate 12 with her and every birthday after that. We should be celebrating the last year before her teen years (even though she already had the attitude of a teen). She should be studying for her Bat Mitzvah. I just can’t. I can’t do this. This is impossible. It is unbearable.
This has not gotten any easier. In fact, it seems to keep getting harder and harder. Life continues to go on, the seasons change, and one day continues to turn into the next. There is so much growth and activity surrounding me and yet I feel stagnant, rooted to May 9, 2019 at 4:21 PM when Ariella took her last breath. Because that moment is when I too died. I am not the same person, will never be the same person. All the best parts of me died along with Ariella that day.
This year, instead of a noisy sleepover at our house we celebrated Ariella’s birthday without her, where she would have wanted to be, at Build-a-Bear to build bears to make other children feel better. Instead of taking her out to one of her favorite places for dinner we are gathering at the cemetery, sending her messages that we dream about telling her in person. Instead of her getting upset with us for singing Happy Birthday to her (she hated that and actually had a meltdown over it at one of her parties) we can only hope that she hears us singing to her from Heaven. I still get to celebrate my Dad and Ariella together, but this time it’s at their grave sites. It is all wrong. So very wrong. Two of my favorite people have died. The most important person in my life died. I don’t want to live without her. I don’t want to do this anymore.
Cancer is a fucking thief. Cancer stole every fucking thing from me. Before cancer ever stole Ariella, it had already taken so much from us. Cancer stole our lives. Our feeling of safety, of security. Cancer stole our carefree, mostly worry-free existence.
Cancer stole Ariella’s childhood. Even when she was still here. Cancer stole her innocence, her ability to just be a child. She went from happy-go-lucky to being anxious about needles and chemo, surgeries and radiation. Instead of being nervous about dance competitions she was terrified of scans and the results. Cancer stole Ariella’s ability to dance for a year and a half. Her passion, and one of the few things that would have helped her get through all the bad days was cruelly taken from her, because of the location of the tumor. Cancer stole her normalcy. She couldn’t attend school. She traded camp and vacations for lengthy hospitalizations.
With everything cancer stole, it didn’t stop there. Our lives were irreparably changed once Ariella was diagnosed. We felt like we had been through a war when she finally finished treatment the first time and our fear and anxiety remained, rightfully so, since cancer returned only 5 months later to steal even more from us.
Cancer had already taken so much from us, ripped us to shreds, gutted us. And continued to try to take our spirits. But none of that ended up mattering. Because cancer stole the most precious, the most important. I would trade anything to have her back. I would put up with anything to have her back.
The thievery didn’t stop with our lovely daughter. Cancer continued, continues to steal. Cancer stole my reason for living, my purpose, my identity, my most important role. Cancer stole my joy, my ability to enjoy life. Cancer stole my future. Future milestones with Ariella. Our mother-daughter relationship. My New York buddy, musical buddy. Future memories. I will miss out on talking about boys, teaching her to drive, sending her off to college, planning her wedding, having grandchildren. Cancer stole my ability to enjoy things I used to love. The beach was one of my favorite places but now just a reminder of who isn’t there. I used to love going to NY, even before Ariella but now the thought of setting foot in that city, or even on a train horrifies me because she should be there. Books and TV shows are filled with triggers as is social media. National daughter day? What the hell is that? Cancer stole my ability to just be, just relax. Regular, everyday activities were stripped from my routine. No more picking up from school, helping with homework, watching TV together, reading together, movie night, game night, driving to the dance studio, watching her dance, just parenting. Cancer stole all of that from me. I’m not just missing my daughter, I’m missing everything that goes along with being a parent. Cancer not only stole my daughter’s life, but stole my life as well. Cancer stole who I was. I will never be that person again.
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.
