Author: stein28

I don’t write as frequently as I once did. But I wanted to just provide an update as to how I’m doing. As most know, from now until May is a difficult time. I’m staying away from Facebook memories and I’ll be honest, I’m not doing too great. I’m anxious and jittery and can’t remember the last time I slept through the night. I’m pretty much shaking and nauseas all day long and I haven’t been able to eat much. I appreciate the check-ins I’ve received and I’m sorry if I haven’t replied. Ultimately I know I will be okay but I am definitely struggling at the moment. Thank you to everyone who has been there for me and know that I’m not ignoring you, that sometimes I just need the space.

The whistle of the wind rustling through the trees. The resounding crunch of the leaves below my feet. The harmonious chirping of the birds. The swoosh of the stream as it flows over the rocks. There is a peace to be found on the trails that is difficult to match.

Running trails is fairly new to me. I had lost my running mojo. Running began to feel like a chore and I was no longer looking forward to lacing up my shoes and hitting the pavement. Running became purely goal oriented and I had forgotten the reason I got out there in the first place, purely for the sake of running. For moving. For feeling the gentle breeze tickle my skin. For basking in the radiant sunshine. For experiencing the outdoors in all the seasons. For the solitude and also the camaraderie. For the time spent in reflection. For the natural mood-enhancing benefits. For the reduction in stress and anxiety. So many reasons that I loved running and yet they all seemed to vanish when I was focused on a singular goal. Those positive experiences were sacrificed when all that seemed to matter was pace and mileage and PRs and it sucked out all the joy I had for running. I wasn’t ready to give up on running. After all, it had always been there for me when I had felt otherwise alone. But a change had to be made.

Enter trail running. Running trails is not about speed. It’s about setting your own pace while connecting with nature. It’s about immersing yourself in the natural beauty around you. Losing yourself in the embrace of the towering trees and escaping the chaos of daily life. I dropped my weekly mileage and brought some of my longer runs to the trails. Immediately the pressure to run fast or reach a certain distance was gone. The focus instead was absorbing the tranquility of the natural environment while also maintaining my footing.

I incorporated trails to rejuvenate my love of running. I did not expect to gain so much more. In the midst of those wooded havens I have felt a peace that transcends any I have experienced elsewhere. Trail running is quite meditative, helping to clear the mind of all the noise. It requires a level of attention that road running does not. The uneven and ever changing terrain forces you to be present in the moment, focusing on the rhythm of your steps as they navigate the various obstacles. The serenity and solitude allows for self-reflection and provides a safe space to be present with my grief. Never lonely on the trails though because trail running also provides ample opportunity for connection with my fellow runners.

Venturing into the realm of trail running has improved the entirety of my running experience. By moving away from the rigid constraints of paces and distance I paradoxically surpassed the goals I had previously set for myself without conscious effort. I am still loyal to the familiar predictability of the roads but the trails have become a treasured escape to which I can always return. By incorporating both into my running regiment I have once again found my joy in running.

Racing heart, beating like the loudest drum, feels like it’s going to explode right through my chest. Shallow breaths, gasping for air. Clutching my hair, feeling an overwhelming need to escape my skin. Irritability, trembling, sweaty palms, panic, heightened anxiety, more frequent tears. A funk I can’t seem to shake. A desperate urge to bury myself under layers of blankets, to curl up and hide from the world. The intensity is suffocating, and I can’t find a safe place. While no stranger to panic attacks, these recent moments seemingly emerge out of nowhere, catching me off guard. Then, the realization hits. My body betrays me, vividly recalling moments I try to bury in my mind. It remembers the day our world changed; the tumor on the x-ray, the urgent MRI, the phone call not even 20 minutes after the MRI, the oncologist appointment scheduled for the next morning, and the words “most likely malignant.” My body relives those moments; it remembers the full body shakes while trying my damndest to hold back the tears because Ariella was sitting across from me at dinner when I was hearing this information. It remembers feeling hot and dizzy and weak and doing everything in my power not panic. Trying my best not to scare Ariella. It remembers somehow getting Ariella to her dance class and then calling David to tell him. It remembers trying to hold it together downstairs in the dance studio but failing mightily while being held by another dance mom. Despite not being always at the forefront of my thoughts, my body refuses to forget the day we learned Ariella likely had cancer.

It was a Thursday (Thursday-also the day Ariella died). On that Thursday seven years ago (February 2, 2017 to be exact (February not a great month for me between diagnosis day, the anniversary of my father’s death, and the anniversary of Ariella’s bone marrow transplant)), our perfect world crumbled. The subsequent days were a chaotic whirlwind of tests and scans and jargon and biopsies and doctors and binders and information overload. But mostly fear. Fear and a complete feeling of helplessness. Total loss of control. We learned to control what we could during treatment yet remained at the mercy of cancer. And chemo. And blood cells. And fevers. And countless uncontrollable factors. In just 2 years and 4 months from that pivotal day Ariella endured unimaginable challenges, and we faced the unfathomable. And we somehow persevered. But despite having emerged from the darkness I once experienced, my body continues to stubbornly pull me back to those moments, even when I try to resist.

Typically the anticipation of upcoming significant dates or milestones has been harder than the actual day. And the next 3 1/2 months is just that. The memory of one traumatic event after another. My sentences above are about nearing diagnosis day. But we are also entering the anniversary of the beginning of the end. Ariella went into the hospital February 18, 2019 for what we hoped would be her cure. Instead we left without her on May 9 after witnessing her endure trauma after trauma. Other times of year are hard for sure. But these next few months? Nothing compares to how this time of year affects me. So. I still know I’m in a different place than previous years. And I know I will get through it again. But it might be ugly.

You’d think after going through a horribly traumatic experience, or living through the worst thing you could imagine, you would then get a pass for the rest of your life. Nothing else really bad would happen. But we all know the universe doesn’t work that way. Some people seemingly sail through life with no real hardship while others seem to have to endure one tragedy after another.

Imagine two children, a boy and a girl, friends from the time they were babies. In daycare and then in elementary school together. Imagine telling the boy, aged 9, that the girl, one of his best friends, has cancer and will spend most of her time in the hospital and will be very sick before she gets better. This is impossible for a child to understand. Hell, it’s still impossible for me to understand. But this boy, Daniel, treated Ariella as if everything was normal (which is what she wanted). He was there for her throughout her entire illness and treatment, visiting her whenever he could, making her cards, making her things to occupy her time, and just being the kind of friend we all would be lucky to have. He did anything for her, from allowing her to put makeup on him (which I wouldn’t reveal here if he hadn’t said it himself at her funeral) to going on big rides with her at Hershey Park even though he was nervous. Daniel was special to Ariella and I know she was special to him. So imagine telling this boy, now 11, who had been with his friend the entire time, that it was time to say goodbye. That she died. Loss is never easy but losing a best friend at just 11 years old? Unfathomable. Daniel was lucky to have the support of his two brothers and his wonderful parents. They are a close family and Daniel thrived with the love of his family surrounding him. And he did what he could to keep Ariella’s legacy alive by being a part of Ari’s Bears. He was going to be okay.

Fast forward a few years and imagine telling this same boy, now in his teens, that his father was now sick, also from cancer. Imagine this teen, who already experienced a significant loss, having to bury his father, the hardest loss a child could have, or so you would think. Because it doesn’t end there. Imagine having to tell this same teen that now his youngest brother Kaleb has cancer. Imagine telling him his brother now has weeks, or days to live. Imagine telling him that his youngest brother , not even 9 years old, has died.

I attended Kaleb’s funeral yesterday and while I have been to several funerals since Ariella died, some of them for children and teens, this one hit me extra hard. For so many reasons. Because this family is special. Because just being around them you could feel the love they have for each other. Because they have already endured so much and the hardest part is now, the days moving forward. Because this family was not in our lives because of cancer, they were friends before cancer affected any of us. Because I care about this family and I know the hurt and heartache they feel. Because they have to survive this without their father, without her husband. Sitting there during the service I was immediately brought back to Ariella’s funeral, staring at that coffin, seething at the unfairness of it all. I couldn’t bring myself to go to the cemetery. I knew I could not handle seeing another child-sized coffin being lowered into the ground. I honestly was not sure I would even be able to attend the funeral. But when a child dies, you show up. I remember everyone who showed up for us. I remember the friends that got off the cruise ship and flew home, the friends that drove hours, the friends that changed their flights to a different destination. And I certainly remember those that didn’t. Funerals are never easy. Funerals for children are excruciating. And you show up.

You’d think having lived through this, still living through this, I would know what to say to the family. But there is absolutely nothing to say to make it okay. There are no wise, profound words to make sense of the senseless. It’s all so trite and meaningless. Someone said to me, how do you survive the unsurvivable? And the only thing I could say is that you just do. You just get up each day and go through the motions and somehow the days pass. I can’t say anything to make it better but I do have some words:

Dear Rachel, Daniel, and Jacob,

While each of our families have lost a child I cannot pretend to understand what you are going through. What I do know is that over the years I have witnessed the love you have for each other and know that ultimately you will be okay. I know it may not feel like it now and that’s okay. It is okay not to be okay. It’s okay to cry and scream and hide from the world. And feel whatever you are feeling. You are not alone in this. This is all so incredibly hard and unfair and simply too much and yet you will survive this. Don’t be afraid to ask for help. You have an incredible support system and I feel comfortable in speaking for David in saying we are both always here for all of you. There are no words. There is no “at least” or silver lining that can make it okay. All I can say is I am here. Always. Daniel, you were so special to Ariella. And Rachel, Daniel is the amazing, generous, and kind young man he is because of you and Brian. I am absolutely devastated that your family is going through this and wish I could make it better. I am skeptical about what happens after death but I like to think that Brian welcomed Kaleb with open arms and that Ariella was waiting in the wings to play games with him and try to get him to pull some pranks with her. I’m sure the 3 of them will be looking out for your family.

Since Ariella was diagnosed with cancer I have lost count of the number of kids and teens I know that have died. I will say that again. I have lost count. One is too many. But so many that I don’t even know? If you were reading my blog in September when I was re-sharing Ariella’s story, you will remember how much that retraumatized me. You will remember the toll it took on me emotionally and physically. I was anxious and stressed and tired and simply, spent. And I said I was taking a break from advocacy. But the thing is, once you are in the childhood cancer world there is no escaping it. I will forever be entrenched in it and in everything that goes along with it. I feel every new diagnosis, every relapse, every loss. I have gotten to know so many kids and teens whose stories I follow, who I care about and I can’t just close my eyes or ignore it or pretend it isn’t happening. But how many times can a person’s heart be shattered before it can no longer be put back together?

For the first time since 2018, I rekindled the menorah. Some days I lit the candles early, sometimes late, mostly in solitude, and once with a friend. Regardless of the circumstances, I lit the candles and recited the blessings every night. After Ariella’s passing, I found myself estranged from religion. Anger towards G-d, uncertainty about my beliefs, and a disinterest in celebrating anything became the new normal. Joy evaporated, replaced by overwhelming guilt, bitterness, and heartache. How could I celebrate a miracle when we did not get the one and only miracle we fervently begged and prayed for? Miracles were not something I thought I believed in until a miracle was the only sliver of hope left to desperately cling to. Until Ariella’s final breath, I begged and bargained for the miracle we yearned for but did not get.

This year has brought about a myriad of changes, and amidst the uncertainty, something within me has shifted. My perspective on life, on living, has undergone the most profound transformation. Sadness continues to wash over me with frequency, but alongside the sadness exists a glimmer of light attempting to break through, pushing its way into the forefront. While I’ve continued to largely ignore the observance of many holidays, Chanukah, specifically the ritual of lighting the candles, carried a distinct significance for me this year. The idea of a single flame capable of igniting many others without diminishing its own radiance struck a chord with me. Chanukah candles symbolize hope during dark times and illuminate the path towards resilience. While I refrained from engaging in other traditional rituals, simply lighting the candles felt like a powerful first step towards something more meaningful.

The shift in my perspective doesn’t erase the grief that will always be present, but it does introduce a subtle change; a softening of the edges and growing resilience. The weight of sorrow may persist, yet I recognize that healing is possible. I’ve come to understand that healing doesn’t mean the absence of pain, it’s learning to coexist with it. It’s the realization that sadness doesn’t equal suffering and the acknowledgment that both happiness and grief can occupy the same space in my life. I’ve granted myself permission to feel peace and contentment without guilt. And I continue to allow myself to embrace the sadness, knowing those dark moments won’t last.

I’ve been transparent. Throughout these more than 4 years I have been open about the depths of my despair. Anyone who knew me then knows how much I wanted to just die, how much I wished for it, how much I would have welcomed death with open arms. Imagining driving my car off a bridge or into a tree was a frequent theme of those early days. If you didn’t know me then or weren’t an early reader of the blog you can go back to the beginning and see the dark place I was in. It doesn’t get more raw than that. And I didn’t share just for me. Yes I wanted others to have some small understanding of what I was experiencing. This was my way to let others in. But shortly after I began writing I was receiving comments from others thanking me for being able to verbalize their thoughts, for saying what they were unable, for helping them realize they weren’t alone in their feelings while going through their own traumatic experiences. So I wanted to continue writing and just put it all out there. My vulnerability was on display and in another time, another life, I can’t imagine anything more horrifying. But I didn’t want to pretend. Even if I said I was okay I wanted those that matter to know the truth. So I wrote it all down. And continue to write. And yet there is still so much unseen by those who have witnessed this journey from the beginning.

As time has passed I have gotten much better at hiding the full spectrum of my emotions. I continue to share those glimpses of grief, those poignant moments that leave me breathless, those missed milestones, and those especially difficult times, but not every facet of my grief is laid bare. I hold my most fragile feelings close, shield them from the public gaze, to protect myself. The pain that still threatens to suffocate me, those silent, one-sided conversations I have with Ariella, and my father. Those especially private moments that aren’t for others to see. Some things just aren’t to be shared. But that can be a very lonely place to be.

Why am I saying this? I’ve been vocal about how far I’ve come, about how I have moments of pure joy, about how I realized happiness is not farfetched. I have gone from begging to die to actually wanting to live. I am in a very different place with my grief. And I also haven’t been okay much of the time recently. I’ve been experiencing much higher highs but they are followed by much lower lows. Outwardly I may seem calm and at peace but inside just feels like chaos. The lows are often predictable, this time of year certainly doesn’t help, but they also sneak up on me for no apparent reason. And I find myself huddled on the floor, or buried under a blanket, or screaming in the car, inconsolable. I’m tired and unsure of how I am going to make it through this month. This year just has seemed harder. Ironic I guess. Maybe allowing happiness to take root also emphasizes and magnifies the pain. And guilt. Because there is always guilt.

They say that losing a child changes you. For me I don’t think I feel so much changed, as I feel like my traits are more magnified. I have always had anxiety, always been introverted and shy, and always been quiet. After Ariella died those traits had taken over. My anxiety significantly increased and I was diagnosed with PTSD shortly after Ariella died (when I could finally drag myself out of the house and see a therapist). I became more quiet, despising small talk. All of it so mundane and unimportant. How could I have these insignificant conversations when inside all I wanted to do was scream over and over that my child was dead? I turned much more inward and closed myself off, hurting others. When asked how I was I always said “fine”. Did anyone want the real answer anyway? Yes, some people did. But mostly it was just others making polite conversation.

Those who knew me “before” or read my blog from the beginning can see my transformation. It feels like a lifetime and yet just a minute ago that I could not crawl out of bed, that I stopped eating and drinking, that I begged and pleaded and bargained with G-d to let me die. Gradually and then all at once very recently I found myself wanting to live again. I was having more good moments than bad, and was smiling and laughing so much more. I was enjoying life, not just plodding through the days until I could once again escape in sleep. I cannot pinpoint a specific event or moment, I just felt lighter and I knew that I would survive and could continue to have a good life even if it is alongside sadness and grief.

But. And? And life has been really hard lately. I have been experiencing a lot of change. And I have been feeling unsettled and uncentered, like the bottom is going to fall out once again. Triggers have been hitting me much harder, I’m caught off guard more frequently, and even though I’m surrounded by a wonderful support system I’ve been feeling very lonely. I know some of the reason for this but not completely. Is it the approaching holiday season? I’m sure that’s part of it but I don’t think it hit me so hard last year. Is it that I was still somewhat numb and now I’m not? I’ve finally experienced the highs of life again, truly feeling joy, so maybe the lows are hitting much harder? I don’t know. Is it possible to feel fragile and strong at the same time? I feel like the smallest thing may break me these days and I also know that ultimately I will be okay. I did not recognize that, even just a year ago. Probably not even 6 months ago. But knowing that doesn’t make these hard days any easier. What it does is take away that sense of hopelessness and futility. I know that it’s worth it to push through and also that it’s okay to retreat and hide for some time.

I don’t often ask for help. In fact I probably never do. But I am putting this out there. First please just bear with me if I’m less present, less forthcoming, less engaged. But please don’t let me disappear. Because right now that would be really easy for me to do.

Some days a good cry is just what you need. And some days you can’t fucking stop crying. You cry freely in your car, loud and hard until your throat is scratched raw and you have nothing left. Or so you think. You cry silently at work, your eyes welling up and no matter how hard you try to fight it, the tears eventually come dripping out. You curl up on your couch, clutching a blanket, trying to nap, to escape this pain but the tears have a different plan. They remind you that there is no escape. That you are doomed to this life of pain. You collapse to the floor of your kitchen, hugging your knees, rocking back and forth, your whole body shaking with your sobs. You’re literally pulling your hair, crawling in your skin with no way to ease that turmoil. This has been one of those days. You think you are doing okay. That you are no longer busy dying, that life is actually worth living. But then. BOOM! That pain pushes it’s way back to the surface and completely knocks you out. Reminds you that the pain is your shadow, sometimes hidden but never gone. And you’re a complete fucking mess. And you just want to give up again. I guess the difference now is that I know the better days will return. But today really caught me off guard. I knew it would be a tough day. These holidays and milestones always are. But it was exponentially hard today. And this really fucking hurts.

Dear Ariella,

Another milestone birthday. Your Sweet 16. But there is nothing sweet about this 16th birthday. This is your 5th birthday since you died. And these days never get easier. Actually, it’s the days leading up to the milestone days that are so hard for me to get through. They are fraught with anxiety, panic, dread, and sadness. I can feel it physically, in the pit in my stomach, in the way that my heart pounds, in the shallowness of my breaths. These days should be filled with your anticipation and excitement, looking forward to the freedom of being able to drive. I should be worrying about you behind the wheel of a car, not visiting your gravesite. I should be hanging on for dear life annoying you while I press my imaginary break as you drive me around because I know you would be a speed demon. You my fearless child who loved to go fast (except when we needed you to do something, then I never met anyone slower) would probably be terrifying as a driver. I should be showering you with gifts, not decorating your tree at the cemetery. And it saddens me that I don’t know what you would want for your 16th birthday. Well, other than a car. I do know you would have wanted some kind of convertible.

How would we celebrate this big day? Dinner out of course at a favorite place. Would you want steak? Or your favorite taco salad and churros? Or something completely different? But you definitely would do something with your friends. Your friends were your world. What else would we do? It pains me that I just don’t know. I don’t know who you would be anymore and it just keeps getting harder to imagine your life now. I do know that you would still be your sassy, goofy, spunky, kind, smartass, self and I wouldn’t have that any other way.

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, as mentioned above, 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.

Your 9th birthday was 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 5th birthday without you? I’m actually in a better place now. Here is the post I wrote on your 12th birthday, the first one we had to spend without you: 12th Birthday. I’m sharing it here because it shows my survival. It shows how far I’ve come out of that very dark place I was in (and it’s a nice celebration of all your birthdays). I’m not healed. I never will be healed. And I’m still sad of course. Sadness will always be a part of me. Your absence is ever present and there is never a moment when I’m not thinking about you and missing you. But I’m learning how to carry that pain with me in a way that is no longer oppressive. I’m learning to live again, not merely survive. I know you want me to be happy, that you’re probably relieved that I am finding joy again. 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. And I am getting there.

That’s not to say that I’m not still hurting. I hurt for me and for Daddy and all your family and friends that miss you greatly. I hurt for all those who never experienced the joy of knowing you. I hurt for you and all that you missed and will continue to miss. You were looking forward to so much that you will never get to experience. And when I think of all those events, not just the big milestones but also the smaller, mundane moments that make a life, I miss you that much more. I’m learning to live with “and” rather than “or”. I can be sad that you are gone and sad for all you went through AND I can experience joyful moments in my life. I can be angry that cancer stole you from us AND I can be grateful for the time we had together. I can cry for our loss AND I can smile and laugh at all the beautiful memories that we had. I’m reminded of these lyrics from the song “Beautiful Anyway” by Judah & The Lion: “That’s what makes this life so wonderfully awesome And horribly awful Yet somehow it’s beautiful anyway”.

Even though I look for signs from you everywhere, I’m still uncertain as to what I believe happens when you die. One thing I am certain of is that if you are still alive in spirit somewhere, you are with Pop-Pop celebrating both birthdays together. I’m sure you’re also with your friends (too many friends there with you now), probably planning some epic pranks. Please don’t forget to throw some signs our way amongst your partying.

I love you kiddo, to the moon and back, infinity times. Words truly cannot capture how I feel without you. Just know that I love you always, will miss you forever, and look forward to the day we can be together again.

Love,

Mommy