Living with Grief

I feel them coming for me. Reaching out, trying to pull me in to their folds despite my attempts to resist. No matter that I have been trying to live joyfully and find peace, February’s tentacles won’t release me. I thought I might escape their grasp this year. Recently a weight has been lifted and I have felt unburdened, lighter, free. I thought that may help prevent me from being assaulted by the next few months. But it doesn’t matter. February takes hold and will not let go. February 25, 2016: my father died. February 2, 2017: we were told Ariella probably has cancer. February 3, 2017: the cancer diagnosis was confirmed. February 10, 2019: Ariella’s last time competing in dancing. Ever. February 14, 2019: Ariella’s last day of school. Ever. February 16, 2019: Ariella’s last time dancing on stage (at her studio’s showcase). Ever. February 26, 2019: Ariella’s “re-birthday”, her bone marrow transplant. The treatment that was supposed to cure her but ultimately killed her. You can read about the Februaries that I have survived between Ariella’s death and now linked below. When it comes to experiencing this time of year, despite being in a much better place over all, nothing has changed when it comes to the affect these months have on me. My good days are sprinkled with bad moments for seemingly no reason. I cry easily and often. The bad days are more frequent, closer together, and encroach upon my happy times. I feel that despair setting in. The what ifs? The wanting to go back, the begging to go back and make a change, some change, anything, that will lead to a different outcome.

Even small things affect me greatly. I literally cried over spilling milk the other day. I broke down watching a TV show. The other night I was at dinner and at the table in front of me was a mother and daughter. It was everything I could do to not melt down right there. I miss those mother-daughter moments so much. The big ones and the mundane ones. I even miss those days in the hospital during her first round of treatments. I’ve gotten good at pretending. Pretending that I’m okay, even when I’m not. Pretending that I’m not affected, that I am just living life as usual. I’ve gotten good at mostly preventing the tears from escaping. I’ve been engaging with people and life but mostly I just want to hide away from the world, bury myself in my blankets, so I don’t have to face any possible triggers.

The other day I had a minor procedure. Nothing serious though I was sedated and had to have a biopsy (which is very likely nothing and I will not be discussing further as it’s not relevant) and I was immediately brought back to Ariella’s treatment days like it was yesterday. February eight years ago Ariella was also having biopsies and scans to confirm diagnosis. I came close to fainting when getting my IV placed and I relived Ariella getting her first IV ever in preparation for that biopsy. They had difficulty inserting it and all I could then think about was that was the first time of many that Ariella was distressed and in pain and there was nothing I could do about it. February six years ago Ariella was once again getting a battery of tests and scans in preparation for her bone marrow transplant. Me in that pre-op room, with all the questions and doctors and nurses. The sounds, the smells, the needles, the gown, the wristband. Giving a urine sample, swallowing pills. The anxiety. The uncertainty and waiting for results. I was brought back to every hospital room, every procedure, every surgery that Ariella endured. I physically felt her fear and pain. I had support through this. And yet I didn’t share with anyone how it affected me (well I guess now I am). Because I am tired of being that person. The one who makes everything about my trauma, about my loss. I don’t want the sympathy, the pity. Sometimes I just want to suffer through it alone. Sometimes I really do want to pretend that everything is okay. I want to be “normal”, the person I was before even though I know there is no going back. So I feel myself pulling away, shutting down. Because while February may be drawing to a close it just means we are about to enter the countdown towards her final days.

The first February https://lifeafterchildloss.net/2020/02/

The third February https://lifeafterchildloss.net/2022/02/

The fourth February https://lifeafterchildloss.net/2023/02/

Last February https://lifeafterchildloss.net/just-a-short-update/

Last March https://lifeafterchildloss.net/hanging-by-a-thread/

February 1, 2017. A morning like any other, with one small addition. I had taped a heart to the the outside of Ariella’s bedroom door with a characteristic about her. I don’t remember what I wrote on that specific day but it would have been something like sweet or kind or silly. The idea (stolen elsewhere) was to put a heart up every day for the entire month of February. The only other thing of note that occurred that day was that Ariella’s leg pain from her “injury” seemed to get worse. She went to dance that evening and was complaining about the pain and her leg was indeed swollen and red. It was clear this “injury” was not getting better with rest so I knew it was time to schedule an appointment with an orthopedist.

February 2, 2017. A Thursday. Another routine morning, adding a second to heart to Ariella’s door. This was the last “normal” morning we would have. I managed to get her an appointment for later that day, before dance that evening. I was not prepared for the outcome of that appointment. The doctor x-rayed her leg and said there was a tumor. We were sent next door for an MRI right away. We then had time to kill before dance so we grabbed dinner in the area. Not 20 minutes after we sat in the restaurant the doctor calls. Tells us it is definitely a tumor, most likely malignant, and we are already scheduled for an appointment with an orthopedic oncologist the next morning. I somehow managed to get through dinner without alarming Ariella and get her to the dance studio where I broke down in another mom’s arms.

February 3, 2017. I continued with the hearts. This morning I wrote the word “strong” on it. I had no idea how true that word would be. Ariella was the strongest person I knew. While fighting cancer she never lost her spunk, her sass, her joy for life. She wasn’t strong because she had cancer. She was strong because she lived her life to the fullest despite having cancer. She did not let cancer stop her and that was her strength. This day was filled with tests and scans and jargon and fear and anxiety and outright exhaustion. Yet no real answers other than she indeed had cancer. Treatment wouldn’t start until we knew exactly what type of cancer she had and a biopsy was scheduled for Monday. An appointment with the team at Sinai was also scheduled.

February 6, 2017. I don’t remember the order in which I wrote these words on her hearts but I started using words like resilient, fighter, fearless, brave, courageous. Her biopsy was today, the first of many times that Ariella would go under anesthesia.

February 21, 2017. Ariella danced in her dance studio’s showcase. The last time she would dance in a long time. Her doctor had told her no more dancing. She was devastated by this. She had been working so hard on her first solo. We allowed her to dance this one time and she came off the stage crying because her leg was so painful.

For the rest of the month we were pretty much in a holding pattern. For whatever reason her cancer (ultimately determined to be Ewing’s Sarcoma) was taking some time to be diagnosed. It was determined that the cancer had not spread which was good news. Finally we received the diagnosis and treatment was scheduled. Her chemo regimen would consist of 17 rounds of chemo alternating between 5 days and 3 days (all requiring inpatient stays). Chemo would be every 2 weeks with clinic visits in between.

March 2, 2017. Ariella went under anesthesia again to have her Hickman catheter placed. She ended up with a pneumothorax requiring a test tube. This was horrible and painful for her and there were complications and issues and chemo couldn’t start until her lung healed.

March 8, 2017. Chemo began.

I’m not sure why I feel the need to rehash this every year. I remember even when I try to forget. I will never forget how I felt sitting in that restaurant. The pit in my stomach, the lump in my throat, the lightheadedness. I will never forget Ariella’s fear and pain and discomfort. I will never forget how overwhelmed we all were. The fear and shock and complete loss of control. It just seems important somehow. Our lives would never be the same and the repercussions will always be felt.

According to Merriam-Webster, happiness is defined as a state of well-being and contentment: joy, or a pleasurable or satisfying experience. So what does it actually mean to be happy? I’ve had an idealized view of happiness since Ariella died, that since my child is no longer with me I can never again experience true happiness that is not in some way tainted by sadness, anger, or grief. I’ve come to realize though, that thinking of happiness as an all or nothing state is a defeatist and self-sabotaging perspective. It gives me an excuse to not put myself out there, to just accept that things are as they are and that I’m doomed to live an empty, unfulfilling life. Saves me from disappointment and from having to forge my own path towards happiness.

For those who have been following my story from the beginning, you have seen a fundamental shift in my demeanor. You know that about a year and a half ago was when I started finding life pleasurable again, that I had moments of happiness and contentment (going right back to the definition), even if they were fleeting, and most importantly that I realized life was worth living. And honestly, this is frightening. My happiness was ripped from me in the most cruel way imaginable and well, if you’re not happy you have nothing to lose. You can’t plummet back down into that pit of despair because you are already there.

If I put happiness up on this pedestal, this ideal that I cannot live up to, then I don’t need to try and thus won’t get hurt again. But the truth is happiness isn’t being happy 100% of the time, or probably even most of the time. It’s much more nuanced than that. And not all happy times are equivalent. One can be elated, ecstatic, or just content in the moment. Does true happiness without any other conflicting emotions even exist? Maybe in the most fleeting of instances but not as a rule. Was I happy with my life before Ariella was diagnosed? Yes, I was. But was it 100% happiness? Of course not. Is that even a thing? Yeah there were many times that were pure joy, when happiness was all I felt, but more often than not there were many other things that went along with it. Stress, fatigue, discontent with work, etc. So why am I so set on the fact that I will never be 100% happy again? I wasn’t before so why now? I think that it’s more that I will never feel whole again. And I can try and try to find those pieces that will fill in the spaces but nothing will be a perfect fit, there will always be something missing. But does that mean I can’t also be generally happy?

There is still guilt in feeling happy. I know it’s not logical, and that Ariella would want me to live my best life and find joy where I can. And I have those moments. Many truly happy moments that are just that, not tainted, not marred by grief, just contentment in the moment. And generally I’m at peace. And I’m having a difficult time coming to terms with that. It feels weird and unnatural. And maybe will just take some getting used to.

Another year gone. The beginning of yet another year without Ariella. 2025. The year she should be graduating from high school. The year she should be entering college. But. Another year closer to being reunited. Another year closer to no longer feeling the weight of my grief, to no longer trying to avoid landmines, to no longer feel like I am suffocating, to no longer having every happy moment tainted with sadness. I don’t want to die anymore. I realized that a while back. But sometimes the thought just brings such, sweet relief.

The new year. What most view as a fresh start, a blank slate, a time to start over and make positive changes is for me a time of dread, anxiety, anticipatory grief. We start hitting those awful anniversaries beginning in early February; diagnosis day, bone marrow transplant, transfer to the PICU, all leading to her death in May. As much as I try now to live in the moment, control what I can, find any small measure of happiness, my body will not let me forget the trauma endured during those months. It manifests in panic attacks, the shakes, headaches, nausea. I tend to be more emotional, the tears surprising me at their seeming randomness. I begin to engage less with people, with life. I pull away, retreat into my own, safe little bubble. Generally the anticipation of the dates is worse than the actual date and the next several months is just that, constant anticipation while I relive those horrific moments. Last year was the first time I suffered through those days alone and it was not pretty (you can read about it here: https://lifeafterchildloss.net/the-body-remembers/ , https://lifeafterchildloss.net/just-a-short-update/, https://lifeafterchildloss.net/hanging-by-a-thread/, https://lifeafterchildloss.net/im-breaking/ ). I won’t lie, I am terrified that I will find myself back in that dark place. I did come out of it and I know I will again, but it is a very frightening place to be. Please again, just bear with me as I have my ups and downs but don’t let me just disappear into the abyss.

2024 was a doozy. In most ways I was in the best place I had been since Ariella died. I have experienced happiness, been joyful. I looked forward to seeing what life was going to bring. Being optimistic was the rule rather than the exception. I was okay. But in other ways it was the hardest year yet. I haven’t shared everything in my life because not everything is just my story to tell, but it’s felt a bit disingenuous to leave out so much. I’m still not going to say a lot other than my marriage has ended and with the end of my marriage came the loss of the one person that remembers all the dates, that experienced the same exact loss, that knows what it was like because he was there too. The difficult days are that much harder when going through them alone (for the record, I do know I’m not alone, but it’s not the same as being with the person who shared the trauma).

I truly do not know what the next few months or even this year will bring. But I guess none of us knows what life will bring to us. And in the words of Judah and the Lion from the song “Beautiful Anyway” “That’s what makes this life so wonderfully awesome and horribly awful yet somehow it’s beautiful anyway.”

First I want to start by thanking all of you who take the time to read this blog and especially comment. Whether you began following from the beginning or more recently, I appreciate all of you. I started writing for myself, as a way to manage my grief but started sharing thinking it may help others not feel so alone, and help myself to not feel so alone. I have gotten so many comments from others thanking me for sharing and saying they are glad to know they are not the only ones feeling the way they do. I have also gotten so many comments showing support which means so much to me.

There’s a lot in my life I haven’t blogged about as it’s not just my story to share. This last year has been a paradox, probably the happiest I’ve had since Ariella died but also fraught with upheaval, anxiety, and uncertainty. I am in a pretty good place right now but have felt the need to at least for a little while, password protect my blog. If you would like to continue following and be able to read it, please email me at stein28@myyahoo.com and I can share the password. I will activate the password in the next day or so and recent posts will be set to private until I password protect the site.

Thank you all for sticking with me, for reading my story, for allowing me a place to talk about Ariella and beyond, for sharing, for advocating, for being a support, for sharing your own stories, for being there.

I don’t blog so often anymore. It doesn’t mean I’m not sad or that I’m 100% OK. It doesn’t mean I’m not thinking about Ariella. I am. Constantly. But I’m also busy living. I’m trying to make the most out of life even though it’s hard. Last year I really struggled on Halloween. It was a rough day. All Halloweens since Ariella died have been so hard. This year seems different. Linked below is the blog that I wrote on the first Halloween without her which still holds true in some respects but also not. I still don’t love Halloween but I haven’t felt assaulted by it this year. I’m actually looking forward to seeing the kids in their costumes at school today. I’m actually excited to participate in their trunk or treat and be part of their Halloween. This feels like another step to being ok. To carrying joy and sadness together.

Halloween

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