Month: December 2023

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.