Tag: cancer

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13th Birthday

Dear Ariella,

Today is your 13th birthday. A milestone birthday. Finally a teenager (though you had the attitude of a teen by the time you were 8) and you’re not alive to see it. What we should be doing this weekend: Not a big party, since you would have just had your bat mitzvah, but maybe a sleepover with a couple of your friends. Or a mother-daughter trip to New York to take in one of the shows you’ve been wanting to see. Or a road trip adventure to someplace you’ve never been. Definitely dinner at one of your favorite restaurants. Since this is fantasyland I am imagining what we would have done had there not been a pandemic this year. Though it shatters me to think about it, I can’t not picture what this day would look like if you were alive.

Your birthdays were always extra special because we celebrated with Pop-Pop, whose birthday is the day after yours. Did I ever tell you that when I was in labor Pop-Pop actually said to hold on until the next day so you would be born on his birthday? He was joking of course (I think). This after you were already 10 days late. You always did do things on your own time, never in a rush. In fact I think you are the slowest person I have ever known. Anyway, your last birthday with Pop-Pop was in 2015, though of course we didn’t know that then. Just 4 months later he died and we were definitely missing him on your 9th birthday.

This picture above was your 9th birthday, your last normal, birthday. We missed Pop-Pop but unbelievably it was going to get worse. Our world was about to implode. On your last normal birthday you got a phone call from Mickey Mouse (or maybe it was Goofy) telling you that you would be going on a Disney Cruise and trip to Disney in April. That trip never happened. Little did we know that your hurt leg was more than just a dance injury. That it was cancer cells, mutating and growing, about to change our lives forever. Little did we know how much our lives would change. Never could we have imagined that you would live through only 2 more birthdays and that you would be fighting for your life for both of them.

I am glad you got the opportunity to experience what it feels like to fly on your 11th, your last birthday. The freedom, the weightlessness, a few minutes away from the cancer and illness and fear. There is no feeling quite like it. I wish that I could fly, leave this earth, and join you where there is no more sadness, pain, fear, and illness.

What do I want you to know on this milestone day, this 2nd birthday without you? I’m struggling. I’m sad and empty. Many would say that you would want me to be happy, that I should be happy for you. But I disagree. Not with you wanting me to be happy. Of course you do. You didn’t want to see anyone hurting, you always wanted to make them feel better. But you always understood that it was okay to be sad and scared and worried and it was okay to express those feelings. In fact you often expressed those feelings, and quite loudly I might add. You were never taught to hide them and put on a happy face for the sake of others and you wouldn’t want me to do that either. You would want me to be happy, but in my own time, and for me, not for anyone else.

Not much has changed since your last birthday, other than it’s just harder. It’s harder to get through the days. I miss you more and more each day. I miss your laugh, your smile, your hand in mine. I miss the excitement you had for your birthdays and the anticipation for Halloween. Random memories pop into my mind with no rhyme or reason and I love them, but they also feel like a sucker punch to the gut. I wish I had taken greater note of the memories we had but how could I have known? Not the big memories, but the smaller moments. The mundane ones that made up our lives. The funny things you said or did. The little things that you don’t think you have to remember because they will always be there and moments like that will continue to happen. I thought we would have had a lifetime of moments, a lifetime to make memories, not just 11 years and 7 months. Each day, each milestone, each birthday, each year, takes me farther from those memories. But yet they also bring me closer to joining you. Time is both a gift and a curse but mostly a curse. Because there is so much time left without you.

Things have been hitting me extra hard lately. I had to leave an exercise class early the other day because of a song. I have gotten teary in many a class but this time there was no way I could stay. I have never left a room so quickly, but to be fair, “Tears in Heaven” is a sad song on a good day. I had asked you for a sign earlier that day and I wondered if that was it. If so, next time I need happier, more uplifting sign! Or at least wait until I’m not in a public place. Everything is a trigger, everything brings up a memory. I would say it’s the time of year, but it’s always the time of year. After your birthday is Halloween and the holidays, and then we are getting back into diagnosis day and February, the beginning of the end. I am constantly plagued by the “what ifs” even though they won’t change anything. Initially, when you were diagnosed and during treatment it was “what if the treatment doesn’t work?” “What if you relapse?” “What if you die?” We imagined the worst case scenario and were terrified, but we couldn’t really imagine it. My thoughts went there but didn’t stay there. Because there was always hope. But after you relapsed it was “what if we had done something differently?” The wondering doesn’t do anyone any good but I can’t shut off those thoughts.

I’m still uncertain as to what I believe happens when you die, but one thing that I am certain of is that if you are still alive in spirit somewhere, you are with Pop-Pop and you should celebrate both days together. I would say eat lots of cake but you never were much of a cake person so have your favorite taco salad, and churros and ice cream. Daddy and I are going to celebrate your life with the same at your favorite restaurant. I’m sure you’re with your friends, probably planning some epic pranks. Please don’t forget to throw some signs our way amongst your partying. Here are just a few random pictures from some of your birthdays over the years.

I love you kiddo, to the moon and back, infinity times. There is so much more I want to say to you, but will keep that between us rather than on the blog. Just know that I love you always, miss you always, and look forward to the day we can be together again.

Love,

Mommy

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February

It’s here. It’s well underway. February. The month that started it all. It actually started a year prior, in February 2016, with the death of my father. He died on the 25th and was buried on the 29th. I hate that it was such an unusual day. I’ll never be able to look at leap day as anything other than the day I buried my father. February 2017. Diagnosis day. Biopsies. Scans and tests and procedures. Appointment after appointment. Waiting. More waiting. We knew we were dealing with cancer but it took weeks to confirm the actual beast we were facing. Waiting to start treatment, worrying that the cancer cells were rapidly multiplying, taking over while we had to wait to find out what type of cancer, which would determine the treatment. Central line placement, pneumothorax, chest tube. All of this before treatment started, which finally began in March. Did that delay allow those microscopic cells to start taking off through her blood stream, unable to be detected by chemo? Or was it our delay? Brushing off her pain as an injury that would get better with rest? Or was she doomed to succumb no matter when we caught the cancer? February 2018. Fraught with anxiety. Recently off treatment, in between scans. Everything still so fresh in our minds, worrying about relapse. We got lots of congratulations at that time, but I just couldn’t fully celebrate. Because I wasn’t convinced the cancer wouldn’t return. February 2019. Started out so hopeful. Radiation did the job it was supposed to do. Ariella was cleared for bone marrow transplant. More tests and scans. More appointments. And some optimism and hope mixed in. February 11, spent all day at Hopkins for blood work and baseline tests and such. February 18, admitted for what we thought would be 4-6 weeks. Starting the pre-transplant radiation and chemo. Actually managed to have some fun in the hospital. We (thought) we knew what we were in for so were making the best of the situation. February 26, the day we were all waiting for. The day we hoped would cure her for good. The day that set her death in motion. Bone marrow transplant day. What people often call a “re-birthday”. I would give anything, anything to roll back the clock to that day and change things. Not do the transplant. Or do it a week earlier, or a week later. Anything that could possibly change the outcome. Ariella didn’t end up in the ICU until March but February started it all. And it kills me to think about what could have been, had it all gone well like we expected. Why? Why did this happen?

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Dear Lily,

When I first heard of you, you were a story. A name without a face. A survivor. When Ariella was initially diagnosed our doctor gave me your mom’s name and number. He told me about this amazing girl named Lily, who was a survivor of Ewing’s Sarcoma. He told me how great you were doing and that your mom would be more than happy to talk with me about anything. At this point you were more than 5 years cancer free (from what I recall). The doctor gave me major hope that day.

It took a little while but I did eventually get in touch with your mom. We didn’t talk much but it was comforting to know someone who had been in the same situation. Then one day Ariella mentioned a girl named Lily that she met in clinic. Didn’t say much, just that she met a nice girl. The next time I was there I met you and your mom. It took several times after that to put together that you were the Lily the doctor had told me about. And I was devastated when I realized that. Because it meant that you had relapsed, even though you should have been considered “cured.”. But I continued to have hope. Because you seemed so strong and happy anytime we saw you in clinic. You always had a smile on your face. You would come in with your text books and do school work, or play games with your family. It warmed my heart. Ariella always checked the board to see if you were going to be in clinic when we were there. Even if she didn’t say much, she always wanted to say hi. I’m sure she looked up to you and related well being that you both had Ewing’s. And though you were older, you were one of the closest in age to Ariella among those she saw regularly. Ariella loved doing the photo shoots with you and it was you that helped her build her confidence to do the pictures with her bald head. She saw you frequently in clinic rocking that look and commented on more than one occasion about how pretty you were. You had a confidence that is hard to come by and Ariella admired you.

Even though you were going through your own stuff you always took the time to reply to Ariella’s texts. She was happy to have someone to ask questions to and commiserate with. It helped her to not feel so alone. Because the truth is, no one who hasn’t had cancer could understand what any of you went through. I’m glad she had you.

When I saw you at CureFest I was surprised and devastated to hear that your treatment wasn’t working. Surprised because you were mostly smiles and just exuded pure joy. You were happy to reunite with your friends and passionate to advocate for childhood cancer research. You spoke beautifully and eloquently and it was heartbreaking because it was evident that you were also hurting. Despite your illness you made it a point to come to Ariella’s birthday celebration at Build-a-Bear. That was so special to me and I hope I effectively conveyed my appreciation to you that day. It can’t have been easy to be confronted with the death of someone who had the same illness as you. But honestly, that’s where all you kids have amazed me. You forge friendships knowing the outcome is unknown. Knowing you may lose in the most permanent way many of those friends. And yet that doesn’t stop you from loving them. And you support each other through it all. Kids shouldn’t die. And kids shouldn’t see their friends die. We had to tell Ariella of several children that had died, only one that she had personally met. And I hated to do it every time. Because it would force her to face her own mortality. Yet all of you had the brightest spirits. Nothing could dim your light.

Friendships forged in the cancer community are different than any other relationships. I was grateful to meet you and your mom. You both always had bright, beautiful, smiles and being around you just made it feel like everything was going to be okay. When I heard you relapsed again the same day Ariella died, I was heartbroken all over again. Because I cared about you too. You were our original hope story and I needed you to be okay. Someone has to survive, right? If not my daughter than at least someone she loved and cared about. Someone we all cared about. You heard that your friend died and then your world fell apart once again. But that didn’t stop you from making your voice heard. You were an inspiration, not just to Ariella and your other friends, but to me as well.

I was at work when I heard that you died. It was the end of a day that was already a struggle for me. I hopped onto Facebook briefly when I was making copies and I saw your mom’s post. And the tears I was fighting all day finally broke free. I am heartbroken for your family and friends. Another family ripped apart by this devastating disease. And I am so sad for you. You had so much potential. You were going to do great things. You had already done so many great things. The world lost another amazing person. It was an honor to know you Lily. The world is not as bright without you in it. Thank you for inspiring me and inspiring Ariella. I hope you two are dancing and singing and doing your make-up together. You will be missed.

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Cancer is a Thief

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.

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Two Worlds

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.  


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Back to School

Here we go. The back to school ads are everywhere. School supplies, clothes, uniforms. Parents celebrating that the summer is over, the kids are finally getting out of the house. The parents lamenting that their kids are growing so fast. They wish time would slow down. They don’t want their children to grow up. Be careful what you wish for. My child never got the chance to grow up.

The first day of school posts have been here for weeks now. I try to avoid the posts. I don’t do much on Facebook. I post updates of course about Ari’s Bears, maybe share some articles, but mostly stay on social media to keep up with the children I follow. The other posts hurt too damn much. In all honesty, even the posts about the children with cancer hurt because they are still alive. They have hope. In many cases the posts are about celebrating remission, end of treatment, ringing the bell. And many of those kids are starting school and engaging in typical childhood activities. But I worry about them. I want those kids to be cured. I want them to survive. I know them, I know their families and it is important to me to know how they are doing.

So of course I inevitably start scrolling through my feed. Usually at the top of my feed are the bereavement groups I’m in and pages I follow. But then the regular posts come. They are in my face showing me everything I am missing. The happy, intact families on vacation. The children at a dance competition. The parents attending various events for their children. The parents upset because their kids are growing too fast. The parents missing their kids who are at camp. Parents crying about their empty nest now that kids are heading to college. Each post another punch in the gut, a knife through my heart, a slap in the face. I quickly shut it down, tears streaming down my cheeks, wanting to throw up. And now the first day of school pictures. I will never have another first day of school picture of Ariella. I will never again see her standing in front of our house with her book bag on her shoulders, smiling so big because she loved school. I will never again have someone to help with homework and projects. I did not enjoy helping with projects. There was lots of yelling and complaining. Papers slammed down, pencils thrown. But I would give anything to have another project, another math sheet, another book report.

I never again get to share in the anticipation of the first day of school. Hearing about the classmates and teachers. Which friends are in the same class. Which electives will be selected. I never get to have another first day of school picture. No more comparing how much Ariella grew from the previous year. No more pictures at all. So I will share all the first day of school pictures I was blessed to have. I had to dig deep to find some of them because I did not always post them on Facebook and I don’t keep all my pictures on my phone (I have them all printed). I figured it wasn’t anything special. Every child has a first day of school, why do we need to share all the pictures? Little did I know. It never occurred to me that we would not get to have first day of school pictures through 12th grade. It never occurred to me that Ariella’s life would be cut short, that her school memories album would end in the the middle of 6th grade. I never imagined that I would be so desperate to find her first day of school pictures because they are all I have now.

  • 1st day of preschool (2s)
  • 1st day of preschool (3s)
  • 1st day of preschool (4s)
  • 1st day of Kindergarten
  • 1st day of 1st Grade
  • 1st day of 2nd grade
  • 1st day of 3rd grade
  • 1st day of 4th grade
  • 1st day of 5th grade (in January when she returned to school after treatment)
  • 1st day of 6th grade

The pictures should not end there. We should get six more first day of school pictures. We should get a going off to college picture. This should not be it. How? How did this happen? Why did this happen? How could this beautiful life be cut so short? She had so much more to do, so much more to give. Look at that face. Pure joy and excitement. And that was a chemo week for her. Chemo wasn’t going to keep her from school. How can anyone look at this child and think this would be her last first day of school? That in less than 10 months, this child, this beautiful child with so much hope and potential would be dead? I still can’t fathom it. That this beautiful, dancing flame was extinguished. That this brilliant spark of light no longer shines. She was supposed to survive.

Today should be Ariella’s first day of 7th grade. But instead we have empty steps in front of the house, an unused book bag hanging by the door, unfulfilled dreams, milestones that will never be reached. This last picture was a new beginning for Ariella. A new school. Middle school. A private school where most of the kids had known each other for years. But that didn’t daunt Ariella. She jumped right in and made new friends almost immediately. A wonderful, supportive group of friends. To them she wasn’t the kid with cancer. She was just weird, loud, goofy, and outgoing Ariella. She very quickly planned get togethers and sleep overs. Her entry into this new school was seamless. The world was hers for the taking. She had so much promise. How did everything go so fucking wrong?

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Kindness

Running through my neighborhood I run past bikes strewn across lawns, kids running through sprinklers, scooters left haphazardly on the sidewalks, pictures drawn from chalk. A family packing up the car for vacation, two parents and two children. All evidence of the happy lives going on behind the front doors. But is it really?

You never know what’s going on behind those closed doors. Who is using those bikes? Should there be one more? Is the picture drawn by a child who is sick and cannot join in the more physical activities? One parent is supervising. Is the other parent inside, or is it something more sinister? What we see is just a tiny glimpse of someone’s life and we shouldn’t even begin to guess at the reality. What do people think when they see me? I probably look fine to others when I am out running. Maybe they think “good for her, she’s taking care of herself by running. She cares about her health.” Or when we are out walking our dog, talking with each other. Do they think “what a nice, happy couple walking their dog and enjoying their time together?” We go on with our daily routines which makes it appear that we are typical people just going about our lives. Rarely can others see what’s below the surface unless we show them. At our house there are no toys or bikes outside but a stranger happening past wouldn’t think anything of it. They might see our dog and cat looking out the door and think that a home with pets is a happy home. There is no evidence that I am broken. No evidence that behind the walls of our well taken care of home is unfettered grief and heartbreak. Even in public, though I feel like a shell of my former self, others may look at me and think I look unhappy but they certainly would not see the extent of my anguish (unless I am crying, which does happen quite a bit).

Even when Ariella was in treatment a bystander observing our family wouldn’t think anything was wrong (unless Ariella was showing off her bald head). We had fun, Ariella played outside, we looked just like any other happy family. We wore good masks. The worry and fear wasn’t evident. We looked carefree, like we had it all, when in reality we were facing our worst nightmare.

The point of this is that you never know what someone is dealing with. My temper is short these days. I rarely smile, and have no desire to make small talk. Strangers may take that as rudeness. But I can’t help it. But when someone shows kindness, by a compliment, or just with pleasant greeting, etc., it can offer a little brightness to someone who just may need it.

I have experienced a lot of kindness from strangers recently, even when I feel like I don’t deserve it. Here is an example. Well this man is not a complete stranger. He lives in our neighborhood and (I’m saying this in a joking way) accidentally traumatized Ariella one Halloween. I think it was her fourth Halloween so she would have just turned three a few weeks prior. She was a pirate. When we got to his house for trick or treating he opened the door but remained hidden by the wall. After a few seconds he jumped out wearing a gorilla mask and loudly roared. Well that scared the shit out of Ariella. She jumped, screamed, cried, and ran away, knocking off her bandana. For the longest time after that she wouldn’t walk past the house and would frequently talk about the “Gorilla House”. She even remembered that her bandana came off. She eventually outgrew her fear of the house and even trick or treated there, but she never forgot that one night.

I’m telling this story because we never knew this man personally. Trick or treating was our only encounter with him during all the 12 years we’ve lived here. And then Ariella died and he came to the Shiva house (I don’t know if he was at the funeral). I’m not sure how he knew our situation but I think he knows David’s mom (everyone knows David’s mom so it’s a good bet that’s the connection, and I’m pretty sure that’s what David told me). It took a minute before I realized who he was but then I joked with him that he was the one that traumatized Ariella years before. I hadn’t seen him since the Shiva but the other day when I was walking the dog he was sitting outside on his deck and saw me walking by. He made it a point to check in with me and sincerely said I could let him know if there was anything he could do. I didn’t even see him at first, he called my name to get my attention. He could have ignored me. Who wants to talk to a grieving mother you barely know? I truly was touched.

The number of people that followed and continue to follow Ariella’s story astounds me. Many, many strangers invested their thoughts and prayers and energy into Ariella. Following a child with cancer is no easy feat. While at times it can be quite uplifting it is often emotionally draining. Strangers get to know those kids, care about those kids, and too often the children do not survive. And yet these people we have never met followed her to her last day and continue to follow her legacy through Ari’s Bears. Strangers sent Ariella cards and gifts when she was in the hospital. They have sent us bears and donated to Ari’s Bears. They comment here, let me know I am not alone. Many who live local to me, whom I have never met in person, have offered real, tangible help (for example grocery shopping for us). In a world where it’s so easy to focus on the bad, we need to remember there are truly, kind people.

Acquaintances and strangers that go the extra mile when clearly they do not have to helps get me through. They remind me there is good in the world, that people are generally caring, that there is some lightness in the dark. We would expect this from our family and close friends and we have mostly gotten it (though for the record, a comment on a facebook post here and there does not equal support) but ever since Ariella was diagnosed I was surprised and pleased at support we received from people we had never met. Many of them have become our family. Especially the cancer families. The pediatric cancer world is supportive by nature. Though the families are each fighting their own horrific battles they still take their time and energy to support other families. And then when the unfathomable happens the bereaved parents community reaches out. Again, these parents are in a never ending state of grief and yet they want to support others who are going through the same thing. The pediatric cancer and bereaved parents worlds are the most supportive, caring clubs that we never wanted to join.

So again, you never know what someone else is dealing with. You don’t know what’s behind that smile, behind those doors, beyond the surface. Everyone is going through something. No one’s life is perfect and a little bit of kindness goes a hell of a long way. An act of kindness may make a huge impact on someone, even if you don’t see it right away. Even if someone is not kind to you, be the person who will show them some kindness. They just might be the ones who need it the most.

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Iced Chai Latte

I can’t. I just can’t anymore. I just wanted a fucking iced chai latte and that was too hard. Trying not to cry all day long but every fucking thing is a reminder. Drove someone to an appointment at the hospital where Ariella was born. The best day of my life. Never in a million years would I have imagined that less than 12 years from that day she would no longer be here. She was perfect and healthy at birth, even though she was born by c-section. She was rarely sick and I couldn’t imagine that I would only get to be a mom for 11 1/2 years. And don’t tell me I will always be her mom. It’s not the fucking same. I don’t get to see her grow up. I don’t get to teach her to drive. I don’t get to hear about boys and take her shopping for a prom dress. I don’t get to send her off to college and help her plan a wedding. I don’t get to brush her hair and tuck her in at night. I don’t get to hug and kiss her. I don’t get to cook her dinner, pack her lunches, share sushi with her, watch her dance. I don’t get to read to her, read the stories she wrote, receive the cards she always made. I don’t get to help her with her homework, take her to musicals, take her on vacation. I don’t get to see how she would have turned out. I don’t get to see the amazing adult she would have become. I don’t get to continue the amazing mother-daughter relationship we had. I don’t get to have grandchildren. I don’t get to just be with her, every day. I lost everything. I am missing out on everything. And I feel guilty about it because I should be sad for her, for her life being cut so short but I am sad for me, for all I’ve lost and all I will never have. And yet I am wasting this life I have. Maybe I should try to enjoy life, go on living because she can’t. It seems wrong to not “live” when all she wanted to do was live. But it also seems wrong to live when she can’t. When she deserved it. Why should I get to live when she can’t?

The second appointment of the day was at an imaging center. The same center where Ariella had her follow up x-rays. I will never forget the anxiety walking into that place. My heart pounding, adrenaline pumping. Literally shaking. And that feeling would linger until we got the results. It was an x-ray done at this place that showed her relapse. While waiting there I tried to distract myself. I read and watched a show on my phone. But my thoughts always went back to all the times I was there with Ariella. And the tears would start.

It had been an especially rough few days. I just wanted my iced chai before heading home after a long day. In the parking lot. A Baltimore Symphony Orchestra bumper sticker. Reminded me of watching the BSO perform Peter and the Wolf at Hopkins when Ariella was there for her BMT. She was feeling so good. I just don’t understand what fucking happened. And I just want to go back and change the variable that made everything go to shit. Remembering the good times, remembering the bad, makes no difference. It all leads to my child dying. Sometimes remembering the good is harder because it only reminds me that this never should have happened. Cancer didn’t kill her. It was a perfect fucking storm of everything that could go wrong with the treatment. So the good times, even in the hospital because there were some, just serve to show how naive our optimism was. How we should never have done the transplant. Because that transplant took the life of the girl in the hospital who was just days prior dancing in the hallways, silly stringing her teacher in her hospital room and pranking her nurse with a scary clown mask. She wasn’t sick. She didn’t look sick. She didn’t act sick. But still she died. It’s not fucking fair.

All of that from a bumper sticker. But I wanted my chai and after navigating probably the world’s most awful parking lot I couldn’t leave empty handed. So I composed myself and went in to get my drink . But right there in front of me in line, a girl about Ariella’s age, with her mother. They were joking with each other. Laughing. Ariella could always make me laugh. Even when I was angry with her. Sometimes I had to hide my laughing because she did or said something she shouldn’t have that I found funny. Sometimes her tantrums (and yes, even at 11 she had tantrums, she wasn’t perfect) were so over the top I couldn’t help but laugh, even though that set her off even more. But she was funny and silly. She made weird and funny faces. A few days after she had her trach placed I was having her make funny faces with me. She made up songs that made no sense and if you told her she was weird she said “thank you.” I miss laughing with her. I miss the sound of her laughter. It was contagious. I have laughed since Ariella died but it doesn’t sound the same to me and it doesn’t feel the same. Many times I’m laughing at something I wish I could share with Ariella because she would also find it funny. My laughter feels hollow now. It’s tinged with sadness. It’s not as loud, not as strong, fades as quickly as it started.

I made it through the line though my eyes were tearing up. While waiting for my drink I decided to check my phone. I wanted to check in on the writing group I’m doing which is on Facebook. I opened the app and had some notifications and I made the mistake of looking at them. One was a beautiful post by the mom of another girl with Ewing’s sharing Ariella’s page and website. I loved that she shared it but I wasn’t expecting to see it and it made me cry. Another had shared a picture of Ariella and her cousins 3 years ago, before it all went to hell. And at the top of my newsfeed was a post with pictures of the Dancers Against Cancers hope stories who are now angels. Just one year ago we were in LA with Dancers Against Cancer (fabulous organization by the way, check them out) for the Industry Dance Awards. Ariella met and bonded with other hope stories and was reunited with friends met that previous April. I never dreamed just a year later she would be there again, but this time in a remembrance video.

I make it home, finally. To this.

Just one more in your face reminder. Fuck you Amazon. Kind of ironic though because Amazon has been my lifesaver. If I need something but am not up for going somewhere, I don’t have to. And you can see from this post why I don’t want to go anywhere.

I just can’t do it. I can’t go on without her. We had so many plans. So many things we wanted to do. It’s not fair that I get to go on living when she doesn’t. I don’t want to go on living. Why couldn’t it have been me? She had her whole life to live. She had so much good to do in the world. She was only just getting started.

There is nothing good that will come from this. There is no lesson to be learned from my grief. Anything I may have needed to learn or do did not require my child to die. At the end of each day I feel like “Yay, I made it.” But for what? What am I making it for? I just have to wake up and do it again. Day after day after day. Just going through the motions. Not enjoying it. Suffering from pain and heartache most of the day. Who wants to live a life in pain and yearning for the one person you can’t have? It just seems so daunting, so hopeless. I don’t know how to continue.

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The Retreat

This weekend David and I went to a retreat in Tucson, AZ.  It was for bereaved parents whose children died from cancer.  There is a lot to process from this weekend, but it was good.  We flew across the country to a vastly different landscape and though of course the heavy weight of our grief followed us there, while there it felt different somehow.  I didn’t feel like I was in my real life.  Real life felt far away.  There was a moment when I left dinner to grab a sweatshirt. It was so dark and quiet and peaceful when I was walking to and from the room. I just wanted to soak in that peace and beauty, knowing it wasn’t going to last. I wish I could have stayed there.  Pretend like my life now was a horrible nightmare.  But that would be pretending my past life didn’t exist, and I could never wish Ariella away. 

When David and I were first invited to this retreat we accepted almost immediately.  We were invited within the first month of Ariella’s death so I had no inkling as to how I would be feeling by the time the retreat rolled around.  As the weekend inched closer, I started becoming a bit hesitant.  Not to the point that I wanted to cancel but I was certainly nervous about what was in store for us.  Ariella’s death is still so raw.  There has been no healing, no scabbing over of the wound.  The cuts are still fresh and I don’t know how much more I can bleed from my wounds and still breathe.  I didn’t know if I would have the strength to share my grief with a room full of strangers.  And I didn’t know if I would have the strength to share in their grief either.  But what I realized almost immediately was that these families were not strangers.  It didn’t matter that we had not yet met. There was an instant connection.  Our hearts knew each other.  They knew me in a way no one else can.  This weekend bonds were forged, connections made, and a new family was formed.

David and I left at the crack of dawn Friday, our hearts heavy, leaden with sadness, but anticipating the weekend to come. Two flights, a couple time changes, an emotional breakdown in the Atlanta airport, and 9 hours later we arrived at a ranch in the hot, dusty, dry, Arizona desert with bugs on steroids, an abundance of massive cacti, and breathtaking views. We had time to explore before the retreat officially began and took in this scenery that was so unfamiliar to us. I wrote previously about the desolation and loneliness of the desert but there is so much beauty in the desert as well.

There were 15 families at this retreat. Fifteen dead children. Fifteen families forever changed. More than 15 siblings whose hearts are just as broken. Some, like us, were still fresh to this new life while others were further from their loss. But it made no difference. We all cried just as much, the pain was still evident and raw and present no matter how far along the path. We cried for ourselves and we cried for each other. We felt each others’ pain so deeply, in a way that those who have not been there cannot. But while I was worried it would be too much to share in the other pain, it actually made me feel lighter somehow. Not so weighed down underneath the burden. Because others were there to help me carry my grief, to lift it from my shoulders, to allow me to straighten up, lift my head and talk about Ariella while they really listened. We started to get to know each other. We talked about our children but not always. We are able to talk about other things as well. Where we live, what we like to do, just general life. But we never for a second forgot why we were there, why we met, why we felt so connected. Hugs were freely given, pictures were shared, and stories were told.

We decorated candles for our children and shared our messages that we wrote in a candle lighting ceremony. Most heartbreaking were the messages the children wrote for their siblings who had died. Some had never met their brother or sister while others just said “I want you back”. But deep down the messages were all the same. A deep love for the children that will never fade and persistent pain and heartache. A pervasive yearning for that child and knowing that something will always be missing. That no matter what the families will no longer ever be complete. The ceremony was tragic and beautiful.

Saturday was an emotional roller coaster. We talked about our children. Not so much about how they died, but about how they lived. Even the youngest of the children left their marks on the world. They all had cancer but the circumstances of their deaths were different. Some died from the cancer. Others, like Ariella, from the treatment. And others still from diagnostic procedures where the death of their child was the last thing on the parents’ minds at that time. All tragic. And no matter the official cause we all feel anger and guilt. But no one tried to talk us out of those feelings. No one told us to move on, or that time heals all wounds, or any other trite platitude. We could share anything without judgement, and without others trying to fix us and make it better. Because we all know that we don’t need fixing. Grief is not an illness. We are not sick. But we also all felt blessed to have been the parents of our children that died, even with all the pain we feel now. And it was wonderful to be in a room where everyone understands.

The mood was not always heavy and somber. Saturday evening we gathered for some drinks and then we all had dinner together (all our meals were together). Conversation varied and did not center around our children (though inevitably the talk would always circle back to our kids) and there were definitely lighthearted moments with smiles and laughter. But you could see it in everyone’s faces. The sadness behind the smiles. The smiles that don’t quite reach the eyes. The feeling of “how can I be laughing when my child is dead?” It was a comfort to have my feelings reflected in the faces of others. Grief is a very lonely road and while it can never truly be shared it is a relief to be with others who understand.

The last morning we (except for David-he rode a mountain bike) went on horseback through twisting, hilly, trails to an outdoor breakfast. Despite being bit by one of the horses in the beginning and then having my horse take off because he was knocked into by another horse I really enjoyed the ride. Though I was a bit (extremely) nervous going downhill I mostly relaxed during the ride. Just me and the horse and the beautiful scenery around me. I was able to really quiet my mind and just take in my surroundings. I wish I wasn’t there. I wish none of us were there because of the 15 reasons we were there. But I was grateful to be there. And it was the quiet morning on the horse when I really reflected on the weekend (well other than when we were going downhill and I felt like I was hanging on for dear life). And I started to experience another sense of loss. Because we would soon be leaving our people. These people we already knew before we met. These people who are now family.

The weekend wrapped up with a lovely remembrance ceremony. Pictures of the children were on display. Despite the horrible disease they were facing, their light and joy shone through in their photos. Such vibrancy, such zest, so much potential. A video was shown with the families describing their children in five words. How do you sum up a child in only five words? Those five words cannot begin to describe those children. We heard about each others’ children all weekend and the number of words it would take to capture them would fill a book. And there should be even more. As they were supposed to grow and change there should be more and more words to describe them. Their work here was not done. Their lives were way too short. Fifteen beautiful children who never got the chance to really live.

My words here cannot sufficiently describe this weekend and the emotional impact it had.  This weekend was hard.  At times it was excruciating. There were tears.  So many tears.  Some times quietly streaming down the cheeks and other times ugly, loud and relentless. But there were also smiles and even some laughter. Instant connections were made.  Many hugs were given.  We all understood each other.  It was a safe place. We felt our kids there. David received a blue iguana that he asked Ariella for as a sign. There were multiple rainbows the last day. The siblings bonded very quickly with each other. It was a very meaningful weekend. Humans desire connection. We need it. When your child dies it seems impossible to connect with those that don’t really understand. And we don’t want others to really understand. We wouldn’t wish this on anybody. This retreat gave us the opportunity to make uncomplicated connections. No explanation needed. That is what I have been craving, needing. I was worried it was too soon. But it was the place I needed to be.

Returning home was tough. It hasn’t felt like home since Ariella died. This weekend didn’t feel like my real life and I did not want to return to the quiet, empty, house yet again. I woke up feeling heavy again, bowed down with the weight of grief. I know that grief is here to stay. But that’s okay. Because grief is not the bad guy. I need grief. Because the most important person in my life died. The person who completed me, who made me whole, is dead. I will never learn to live with grief if I don’t face it head on. This weekend was the start of me realizing that one day, maybe, I will be stronger than grief. That I will be able to sometimes push it away, though knowing it will always return.

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The Trek

Just a note, some day for the next month you may get more than one post if I share my writing course writing and have something else to write about. Today is one of those days.

The next couple of months are filled with events or activities that will be hard to participate in but powerful and hopefully therapeutic. Today was one of those events. Justin Berk is a meteorologist in Maryland with a very large social media following. He had gotten involved with one of our local cancer organizations and as part of his fundraising efforts he does a trek across the state of Maryland, walking and biking. The trek is grueling in the hot August sun but he frequently reminds his followers that he and his fellow trek team have a choice to do this. Kids fighting cancer undergo unbearable and toxic treatments without the option of stopping. He and his wife Shannon have since formed their own non-profit to support children fighting cancer (Just in Power Kids) but he continues to do his trek. Each day of the trek is in honor of a child fighting cancer. Ariella was honored in 2017 and 2018. This year she was recognized as one of the “in memory of” children.

Starting last year they incorporated children into the trek by having a “kids trek too” day where children can join Justin and his team on a trail for a two mile walk. Last year I brought Ariella to the trek. She was in a wheelchair, proudly showing off her scars from her external fixator which she had removed just two months prior. She had a blast, talking with Justin almost non-stop for the two miles. I finally met in person some families who I felt I already knew quite well. It was such a great, feel good experience.

This year was much different. I wasn’t sure I would be able to go but David certainly wanted to. And Justin and his wife Shannon have supported us and Ariella so of course we wanted to support them and their charity. Not only had they honored Ariella in the trek twice but they spent time with her at our house and then in the ICU as well. Shannon responded to texts from Ariella looking for advice to manage her side effects. She also made sure to be at the hospital the day Ariella died. They are good people who are doing amazing things for the community and we felt pulled to be there. Some friends of ours were there and some friends of Ariella’s. We got to see our friends who will always be family. We got to see the hope in kids who are in remission or still fighting. We feed off their spirit. They are the strong ones. Not us.

But. Ariella should have been there. This year maybe she would have been able to walk rather than ride in the wheelchair, complaining the whole way about the heat. It was a kids trek and there David and I were, without a kid. Her absence was crushing. It was quiet without her. Seeing the other kids and families just another reminder of what we are missing (not that we ever forget but here it was, in our face). At the end of the trek, when Justin spotted me, he couldn’t hold back his tears when he pulled me in for a hug. He is sincere. He and Shannon care about every child they meet and trek for. And they are supporting Ari’s Bears. In fact, the kids were able to earn prizes and one of the options was to choose a bear to donate. We had to be there. Here’s the thing, once these people are in your life, they are in your life forever. I’m not just talking about Justin and Shannon but anyone you meet in the cancer world. You support each other. Even when you are going through hell. Because they are going through hell too. They are the only ones who truly get it. And anyone who is trying to make the lives of cancer kids better needs our support as well. Too many people look away, don’t want to face it, don’t want to imagine their child sick or dying. But David and I will be there no matter how hard it is. Ariella was there supporting others even when she was sick. She would want us to do the same. And she liked Justin and Shannon and maybe, just maybe she was following along the trek as well. Apparently the trek team viewed rainbows several days in a row.

We have some other things coming up that are also going to be quite challenging. David and I are heading to a bereaved parents retreat in Arizona. I am not sure what to expect. I hope it’s therapeutic, I am sure it will be hard. I don’t know what I hope to get out of it. Mainly I just want to connect with other parents who “get it.” And this is specific to cancer. And I think that makes a difference in being able to relate, at least right now when it’s still so fresh and raw.