Month: January 2025

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.”