Living with Grief

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.

I’m good mostly. Ok. Happy even. There has been a lot of upheaval. Uncertainty. Despite that I’ve been good. Thriving. Enjoying life. And yet. Those moments. They hit hard. All is good. And then it’s not. The back to school posts. The empty nest posts. Ariella should be starting her senior year. We should have one more year with her at home with us. Our empty nest happened 5 years ago. Our empty nest happened when our daughter was only 11. How does one survive this? I’m ok. And I’m not.

Today has been a difficult day. I’m not sure why. There are times when it’s obvious why I am having a challenging moment but others when the funk just sneaks up on me seemingly out of nowhere. I do know that part of it is because I am currently injured and cannot run. Those who have read this blog from the beginning and those that just know me, know that running saved me. Yes it sounds cheesy and dramatic but I laid on my couch for weeks, barely setting foot outdoors after Ariella died before setting out on that first run that got me moving again, forced me in the sunlight, and helped release some of those traumatic memories that were playing in a constant loop in my mind. Running was freedom and peace and a safe space where I could talk to Ariella and cry with abandon and tune out the world with music if that’s what I needed, or where I could dial in with the sounds, sights, and smells of the world around me, distracting me from the pain I was constantly enduring. I do still move but other exercise is a poor substitute for the release I get from running. It also is a bit triggering that my injury is in the same spot of the same leg as Ariella’s tumor. Every time I feel the soreness I feel her pain and also guilt. So much guilt. For not taking it seriously sooner, for not following up after the initial x-ray. The pain in my leg is bringing me back to the days before she was diagnosed and all the what-ifs.

I just returned from a trip to Colorado where I spent time with a dear friend, another bereaved cancer mom, and I think post-vacation blues may be contributing to my doldrums. I love Colorado. Simply being in the presence of those towering, breathtaking mountains brings tranquility. The fresh, crisp mountain air offers a sense of renewal and hope. It felt impossible to be unhappy in the abundant sunshine. But the most special part of the trip was spending time with my friend. Being with someone who understands without having to explain. Being able to talk about our children and cry without worrying about making somebody uncomfortable. Being with someone who doesn’t try to talk you out of your guilt, who lets you just feel without judgment. When I’m with someone who knows the horror and trauma on a visceral level I feel less lonely. And so this trip was much more than a mere vacation; it was a healing and poignant experience.

As part of this trip we hiked the Manitou Incline, a trail up the side of Pikes Peak consisting of 2,768 steps with an elevation gain of 2,000 feet in less than a mile. I’m no stranger to pushing my body to its limits and I’ve been wanting to tackle this challenge since I first heard about it. And a challenge it was. But that’s what I was seeking. Physical pain to distract from the emotional, along with a release of endorphins. Which brings me full circle back to running. Running not only alleviates my anxiety and offers distraction like hiking does, but it also brings me profound joy; I feel adrift without it.

Happiness, once distant, now within my grasp
Resigned to a life of pain and heartache
Tears abundant, laughter absent
Missing, grieving, shattered

A glimmer of light
Gradually brightening, illuminating
Joy becoming tangible
Not fully, but mostly happy

Five years. A lifetime. An instant. I wasn’t going to write this time to mark the occasion. What more can be said? Things are different this year. There has been a lot of change and a good deal of uncertainty. I’m almost happy but also incredibly lonely at times. And as always this had been a challenging time. The anticipation of the approaching days. Reliving those months in the hospital. Prior to May 9 a friend asked when the hardest days end. And I responded that well the anniversary is Thursday and Mother’s Day is Sunday and after that back to normal. And she responded “but it doesn’t work that way.”. And she’s right. It doesn’t. It’s not like a new day dawns and all of a sudden I feel great. But it kind of does work that day. Because on Monday I woke up with a sense of peace, like a weight has been lifted, relief that I once again survived the hardest days. That even though it was quite ugly at times, I made it. Not unscathed but still mostly intact. Because that’s exactly what those days do. They settle over me like a weighted blanket, sometimes threatening to hold me down, trap me in its folds, and smother me. And then the fog lifts and once again I feel okay. More than okay. I feel good in fact. It is a paradox. This year the anniversary of the days from her hospitalization leading up to her death hit me so much harder than in the past for several reasons, which I won’t go into much here. Just to say that even though I have an incredible support system, I mostly went through those days alone, sometimes by choice but often because I had no choice. But on the other side of that, coming out of it I am back to feeling better than I have in a long time. This last year has been like that. The lows have been lower but the highs have been much higher, and more frequent. To all those who checked in and reached out in any way, shape or form, I cannot begin to tell you how much I appreciate you. Those connections were my lifeline, constant reminders that I am never truly alone.

I’m doing the thing. I’m sitting in the airport, getting ready to board a flight to Nashville. I’m facing my fears and doing this travel thing solo. As I mentioned in my previous post, my blog has become about coming back to life while still grieving the loss of Ariella. Though I have had a rough couple of months, generally I have found myself in a much better place overall and actually feeling happy. Though my emotions are still very much up-and-down, being a bereaved mother no longer completely defines me. It’s still very much a part of me and always will be. Ariella is always going to be with me. And sometimes the grief will be overpowering. Thankfully this immense grief is not as persistent as it once was and I find myself stepping out of my comfort zone to do things I wouldn’t have in the past in order to really begin living once again. One of those things is traveling alone.

When I got on the plane, when I landed, when I tried to figure out where the hell I was supposed to catch the Uber, when I had all this time ahead of me that I would have to fill by myself, I started to worry about what I had gotten myself into. But I didn’t waste any time and after checking into the hotel I immediately went out and explored the city. I had absolutely nothing to worry about. Nashville is vibrant and alive and you just can’t help but become immersed in the atmosphere. There is no shortage of places to pop into, all with live music, and that’s how I spent most of my time. In and out of various places, meeting tons of people, and dancing. So much dancing! It didn’t matter that I was by myself. Everyone was a friend. And I just felt so free and joyous and exhilarated.

I spent the weekend running (love exploring new places on foot), doing a few touristy things, and soaking up the sights and sounds of Nashville. I got a tattoo to commemorate the meaningful experience, my first time doing something like this. I had no actual plans and instead played it by ear, which is typically not at all like me. I mentioned in a previous post that the trip would either be incredible or a disaster. And incredible it was. This trip was about unapologetically living my best life and have zero regrets.

Take a risk. It just may change your life.

I wasn’t planning on posting again so soon but this blog is about more than just the sadness and heartache of surviving child loss. I started this blog as a way to process all the overwhelming and complicated emotions I was experiencing in the immediate aftermath of Ariella’s death. I initially was going to write just for me, but grief, especially complicated grief, can be a very lonely place and I thought it may be beneficial for others to know they are not alone in their sorrow. Grief can bring a person to a very dark place and I wanted to share that the feelings of wanting to die, of feeling like you lost your identity and purpose, feeling like there is no reason to live anymore, were perfectly normal and understandable. But as the title says, ultimately the blog is about living with grief. Showing the world how raw and gritty the grief is surrounding child loss AND about emerging from the darkness and moving forward (not moving on), learning to actually live again and enjoy life.

When I started this blog I felt hopeless. I was shattered and did not think there would be any way to put the pieces back together. There was only darkness surrounding me and I truly thought that darkness would last forever. I could not imagine that there would be a time where readers would eventually read about my hope, optimism, and yes, joy. I have been vocal about my recent struggles and I have also felt it important to share my triumphs. I write about them for me, so when I am back in a dark place I can look back and remember that I came through those tough times and will again. I write about them for my readers and fellow bereaved parents so they can know that it does get better, that they too will find moments of happiness and peace and begin finding purpose again. And I write them for all my friends and family, who worry about me, who regularly check on me, without whom I would not have survived.

All of this is my long-winded way to say that after writing and venting and some nonsense with some friends and of course a run this morning, I am feeling much lighter. I am not under any illusions that it is now going to be smooth sailing because if I have learned anything it’s that grief is a roller coaster (especially with the anniversary approaching), but I feel okay. I can face the world. I don’t want to hide. And I haven’t cried for a full day. Baby steps.

I want to start by thanking everyone who has reached out, checked in, made sure I’m ok or reminding me that it’s okay if I’m not. Especially those who have been persistent in letting me know you are there even on those days when I cannot even muster the energy to respond. It has not gone unnoticed and is the reason that I continue to feel connected with the world. Without those reminders it would be so easy to just bury myself under the blankets and hide from life. I appreciate it more than you can possibly understand.

I wish I was writing to say that I managed to drag myself out of this hole I’ve been in for the last month and a half. Unfortunately I feel like I’m pretty much in the same place and I fear I will be until May 9. No matter how much I try to distract myself I can’t help but relive those traumatic days in the ICU. The sounds, the smells, the machines, the tubes. The beeping. Always the beeping. Ariella’s constant anxiety and fear and sadness. The overwhelming nighttime routine. The helplessness, complete lack of control. The images. The ones forever burned in my mind. From March 8 through May 9. It was around this time 5 years ago that I reached my breaking point. And yet I had to be there for Ariella. And we endured so much more. Ariella endured so much more. Detailed memories of Ariella have started to fade which breaks my heart. It’s getting harder to remember the sound of her voice, the feel of her arms around me. But I cannot fucking forget those days in the ICU no matter how hard I try. I try to force myself to get out, to keep busy, but I haven’t been up for much. I cry. All the fucking time. I can’t seem to stop. And not just quiet, gentle tears escaping but full on huddled on the floor in the fetal position sobs. Or breaking down in my car. Or escaping to the bathroom when in public. I’m running. A lot. Pushing myself harder than I should but the pain from pushing my body to its limits is the only thing right now distracting me from the emotional pain. I just want to make it physically hurt.

I’m usually pretty good at pretending that I’m okay when I’m not. But much like 5 years ago I feel like I have reached my breaking point. Since February 18, the anniversary of the day we checked Ariella into the hospital for the BMT, the last day she was ever at home with us, I’ve felt myself sinking deeper and deeper into the darkness until I couldn’t hide it anymore. I unloaded on some friends last night who were not expecting it. Hell, I wasn’t expecting it. I don’t usually let myself be so vulnerable in person, especially with people I am not especially close to. Ironic I know because I put it all out there in this blog. But when I’m typing I don’t have to see people’s faces, their reactions. But I just couldn’t pretend anymore and I did appreciate the sympathy and kindness.

All of this to say I’m still struggling to find the light. It’s always been the anticipation of the dates that is worse than the actual dates. And this time of year is just 3 months of anticipating and reliving and desperately wishing for a different ending. But it feels so much harder this year. I’m feeling very very lost and alone and I really don’t like this place I’m in right now. I want to dig my way out but I just don’t know how. I’m hoping a change of scenery might help. I’m heading out of town in a couple of days. But I am stepping way out of my comfort zone, anxiety be damned, and traveling solo, which is a new experience for me. I feel like it can go one of two ways; be absolutely incredible or a fucking disaster. Stay tuned.

Something I have become good at over the past 5 years is pretending to be okay. Yes I’ve been open and vulnerable and shared my most raw and visceral feelings, but I’ve also become adept at sliding on that mask and smiling through the pain even when it threatens to drown me. Whether I’m freely expressing my emotions or burying them deep inside depends on the situation, who I’m with, my general mood, whatever. Sometimes you just have to be okay, even when you’re not. Which is something that I am struggling with at the moment. I’m not sure why I’m having such a hard time right now. There are obvious reasons of course but I’m feeling in a way I haven’t felt since right after Ariella died. And in all honesty that frightens me. I was in a very dark place then and I feel that depression creeping toward me again, reaching out ready to pull me back into its throes. I never would have done anything to hurt myself but I also would have welcomed death with open arms. And I still don’t like to admit that anytime I was behind the wheel of my car I imagined driving off a bridge or into a tree, just to end the pain. I don’t want to be back in that place but I feel it creeping up on me.

I’m trying to live a normal life. I don’t want to wallow. Feeling sad and sorry for myself is exhausting. I want to return to when I was feeling optimistic, when I felt like there was a purpose to living again. I’m trying. I’m running, I get out, I went out for a friend’s birthday. But none of it distracts me from the darkness that is beginning to fold itself around me once again.

I’ve been called strong, inspiring, resilient, and brave, perhaps for merely surviving but also being so open with my experience. I don’t feel any of those things. I’m not strong for surviving child loss. There wasn’t any choice. My heart continued to beat against my will. And right now I just feel tired. I want to give up. I want to let the darkness take over. It’s only been 5 years. I still have a lifetime to go.

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.