Another Childhood Cancer Awareness Month has ended, and once again, it’s Ariella’s birthday. I’ve grown to deeply dislike September. The constant flood of facts, spreading awareness, and advocating for the cause isn’t just emotionally exhausting, it’s physically draining, too. I found myself sharing Ariella’s story again, from beginning to end. But it wasn’t just the act of sharing; I reread what I’d written before, multiple times. Each time, I relived every traumatic moment.
Some time ago, I learned the difference between feeling pain and suffering. The heartache is always there, but that doesn’t mean I have to keep suffering. And yet, rereading those posts was pure agony. I couldn’t sleep. Anxiety crept back in, and I felt myself slipping into that dark, suffocating space again; unfocused, irritable, and lost.
So why did I keep sharing? And why did I let myself suffer by repeatedly revisiting those horrifying experiences? The first answer is simple: once you’re part of the childhood cancer community, there’s no escaping it. In the beginning, you’re held captive by the diagnosis; treatment plans, hospitals, test results, blood counts, fevers, all of it takes over your life. You’re no longer in control; the disease controls you. But as you move through it, you find yourself deeply connected with other families going through the same thing. There’s no bond like the one you form in this club, this club no one ever wants to be part of. It’s not just about being a bereaved parent; it’s the whole childhood cancer community.
The friendships I’ve formed in this space carry a melancholic beauty. I hate the reason we met, but there’s something profoundly beautiful about just being with someone who understands the pain. No words are needed. We can simply exist together in this shared reality. Bearing witness to each other’s grief and pain is why I keep sharing Ariella’s story, even though it causes more hurt. Because I don’t want other families to endure this unspeakable heartache. I want people to be aware. I want a cure.
Like every other parent, I never thought this could happen to us. I never suspected Ariella’s symptoms were anything more than a dance injury. And this is why, more often than not, it’s the families touched by childhood cancer who advocate. It’s easy to ignore something that isn’t happening to you. I understand that. I wasn’t a cancer parent either, until I was
The second part of the question, why I seemingly inflict the suffering on myself, is more difficult to answer. Part of it is that I am indeed punishing myself. I continue to carry a lot of guilt and regret. Ariella suffered immensely and ultimately died because of decisions we made on her behalf. My suffering pales in comparison to the horrors she endured, and I feel a responsibility to honor her by not turning a blind eye to that reality. Would she want me to keep suffering? Of course not. But she also knew it’s okay to embrace your feelings and not pretend that everything is fine. Strangely, I also reread these memories because at times I feel the need to remind myself that it was my life. Sometimes it feels so distant, like a life I couldn’t possibly have lived, yet the pain remains as raw and intense as ever.
Today is Ariella’s 17th birthday, and it breaks my heart that I have no idea who she would be now. I can still feel her essence; her kindness, generosity, and that unmistakable sass, spunk, and goofy sense of humor. Those qualities would never have changed. But beyond that, I don’t know. I try to imagine her interests, but I’m left wondering. Surely she would have outgrown her love for unicorns, but what would have taken their place? What would she enjoy? What would she and her friends talk about, and what would they do for fun? Would she still love reading? Would she still be dancing? Would she be dating? Which colleges would she want to visit? There’s a world of difference between 11 and 17, between a 6th grader and a high school senior. I only knew Ariella as a child, but now she would be on the brink of adulthood. I can’t picture who she would be at 17, and that unknown, breaks me even more.
Seventeen years ago I became a mom, embracing the role that brought me the greatest joy. While motherhood wasn’t my only identity, it was undoubtedly my most meaningful. Five and a half years ago, I lost everything that mattered, and with that loss, I lost my sense of purpose. I no longer knew who I was, and I felt as though I had no reason to keep going. Over the past year, actually, a bit longer, there’s been a noticeable shift in me: in my grief, in my ability to find happiness, and in my desire to truly live again. The good days now far outnumber the bad. Living without Ariella hasn’t become easier; instead, it’s the way I carry my grief that has changed. I’ve learned to accept the paradox of grief and joy coexisting, though I know I’ll never again feel pure, unbridled joy because from now on it will always be tinged with sadness. No matter how much time has passed I still feel lost, drifting without clear direction. Days like these remind me of that. This is forever.