Living with Grief

Run up and down volcanoes: check
Run through lava fields: check
See puffins: check
Ride a snowmobile on See a glacier: check
See a geyser erupt: check
Visit a lagoon: check
Experience a hot river: check
See beautiful sights and scenery: check
Meet new people and make new friends: check
Step out of my comfort zone for international solo travel: check
Eat good food: check
See a rainbow at the top of a mountain (not on my original list though several times at the summits we said all that was missing was a rainbow): check
See a troll church: didn't know that was a thing, but check
Have an epic adventure: check

Almost exactly two years ago, I found myself in a paradox. I was beginning to come back to life; feeling joy without the heavy burden of guilt, realizing I was ready not just to survive, but to truly live again. Despite the challenges, I was learning to embrace life once again. The sadness and grief remain, yet these past two years have brought a happiness I haven’t thought possible since the death of Ariella. I’ve taken deliberate steps toward healing, pushing far beyond my comfort zone, even traveling solo. This journey to Iceland is another chapter in that return to life.

This trip was an organized trail-running tour of Iceland with Rogue Expeditions (highly recommend. They visit spectacular places and handle all the planning and thinking so you don’t have to!). Still, there were parts that intimidated me: traveling internationally alone, meeting new people, spending a week in close quarters with strangers, and sharing about Ariella in those first conversations. But mostly I was buzzing with excitement in anticipation for this new adventure

I’ve been trying to put this trip into words for days, yet I keep coming up short. I could detail each day, but it would make for an endless post and still wouldn’t capture the depth of emotion or just how uniquely special each moment was. It was a week packed with activity; runs of course and sightseeing, lots of time on a bus, and getting to know new friends.

The runs were unlike anything I’d ever experienced; each one completely different from the last. Even within a single run, every ascent and every turn revealed something new and spectacular. One moment I was scrambling up steep, rocky terrain; the next, rounding a bend to find a glacier shimmering beside the rainbow mountains. Later, I was running with joy through a lava maze and then along the water’s edge; all in the same run. We climbed volcanoes, traversed grassy cliffs, crossed endless lava fields, and spotted sheep, puffins, and rainbows. The one constant was the staggering grandeur of the landscape; so magnificent and vast it made you feel small, as if the mountains had swallowed you whole. Some moments terrified me. Steep descents found me inching down slowly and cautiously, some times practically on all fours like a turtle doing a crabwalk, and narrow sideways paths found me clinging for dear life to chains and rocks while swearing under my breath (and I’m pretty sure out loud as well). More than once I questioned all my life choices that brought me here. When I finally crept and crawled to safety, the tears came; part stress, part relief that I hadn’t plummeted down a mountain, but mostly grief. I was missing Ariella greatly. And yet I felt so close to her in that moment. And I knew she was proud of me.

Getting to some of these runs was an adventure all its own. Bumpy, winding “roads” snaking through the highlands and straight through rivers. Yes, through the rivers. (No bridges in the highlands; it keeps things interesting.) Our guides were trained to read the water and choose the safest path, and they drove us straight through it, supposedly on skill and experience, though at times it felt more like a wing and a prayer. Luckily, we had the best driver in all of Iceland.

This trip was about far more than just running. We embraced our inner Icelanders; soaking in hot rivers, visiting lagoons and pools nearly every day, and chasing waterfalls and geysers. We devoured bottomless tomato soup in a greenhouse restaurant, enjoyed incredible meals, and spotted more horses and sheep than we could count. At one point, we even saw someone riding a horse while holding a beer, without spilling a drop (#runninggoals). We learned about Icelandic history and folklore, where trolls and elves are very real, and yes, there are even elf psychics. (Pro tip: never, ever try to move an elf rock.)

We had three amazing tour guides (one of whom was determined to see me finish every run and keep me from tumbling off any mountains) and, as mentioned before, the best driver in all of Iceland. Then there were the twelve other people who made the week unforgettable. We were all different, but united by a love of running and adventure. Whether we were cruising at party pace on a mountain trail, fighting the wind together, sharing a beer or a shot of Brennivín (with fermented shark, of course), or swapping jokes, we clicked. The trip was filled with laughter, camaraderie, encouragement, and the kind of support that turns strangers into friends.

I missed Ariella deeply this trip but also felt closer to her than I have in a while. She was there in the many rainbows we saw, especially the one at the summit of the mountain on our last day. She was there holding me at the most terrifying parts of the runs. She was at the puffins, a bird I know she would have loved with those orange beaks and feet. I can almost hear her protesting as I drag her away. Ariella would have loved Iceland. She would have soaked up the stories about the trolls and elves. In fact I’m pretty sure she was in cahoots with the elves to control the weather for our benefit. The forecast was not promising. But though it did rain everyday, we had great conditions (other than some wind and some misty rain) on all of our runs. Sometimes overcast but we also saw a fair amount of sunshine on this trip. The rain held off usually until we were back on the bus. We were definitely fortunate with the weather.

Iceland, you did not disappoint. (Okay, missing out on the snowmobile was a slight letdown but buggies made an excellent Plan B, and I’ll take bad weather on a non-running day over one of our runs any time.) From the near perfect weather conditions when running to the daily rainbows to the beautiful and magnificent and otherworldly landscapes to the waterfalls and geysers and volcanoes and hot rivers to the 40-miles of terrain I covered to the challenges I overcame, and especially to the people, this was truly a week I will never forget.

(Check back later for pictures. I always have difficulty adding pictures to this site but wanted to get my thoughts down while still somewhat fresh)

What a weekend! And I am still processing it. It’s true what they say, that the Boston Marathon is a special race. It seems like forever since I qualified, back in November 2023. I had a 21-minute buffer under my needed qualifying time so I was certain that I would make any cut-offs to get into the race. Training for this race began in December 2024. So with 17 months of anticipation, 18 weeks of training which included five 20-milers (one on the treadmill), and 548.69 total miles run during this training cycle, I finally found myself in Boston.

I am lucky enough to have dear friends who live in Boston and I was spoiled! I didn’t have to Uber most places and instead was driven by my friend in and out of the city multiple times. I arrived on Friday and the first stop was the race expo to pick up my bib and race packet. The city was buzzing with runners and I loved seeing all the different color jackets from different years. I could not wait to wear mine (I was being superstitious and would not wear it until I finished the race). I typically do not enjoy the expos, especially at big races. They are so crowded and I find them overwhelming and overstimulating, so I try to get in and out as fast as possible. But in this case there was one item I wanted to buy, a Spike the Unicorn stuffed animal, the mascot of the race. If you knew Ariella you knew how much she loved unicorns so this was a must have. I waited in line for 40 minutes just for that (and a few impulse buys at the register). I pretty much ignored the rest of the expo, not taking advantage of any of the photo ops or anything else as I just wanted to get away from the crowd. Spent the rest of the day and night with my friend catching up and just having a nice, peaceful time.

For some silly reason, I had decided I also needed to run the Boston 5K that Saturday. It’s a big race, 10,000 people, and sells out fast. Out of total FOMO I made sure to register right away and so I was committed. I arrived at the start line and the excitement was palpable. I tried to go easy, treat it as a shakeout run but it was exhilarating! And it increased my anticipation for the big day just two days away. After some down time I was back out to attend a live podcast taping from one of my favorite running podcasters (who I met for the second time at the 5K) and then dinner in Boston’s North End.

Sunday I checked into my hotel, explored pop-up shops on Newbury St, and then just relaxed. Laid out my race gear, kept eating all the carbs, and took it easy. Triple-checked that my alarm was set but with my bus not boarding until 8:15 AM I knew I would be awake with plenty of time to spare. This was something I was a bit anxious about, the late start of the race. My wave was scheduled to start at 10:50 so it took some careful meal and snack planning. I had everything organized and set and hit the sack.

Monday morning. It’s race day! With the later start I was able to “sleep in” a little and didn’t feel rushed at all. Got dressed, did all the things, and made my way to the buses. This is where shit went downhill. The bus situation was a disaster. I heard later that an earlier wave bus or two got lost, and one was in an accident so they were late coming back. The crowd of people trying to get through the security checkpoints was insane and I just kept looking at my watch in panic that we wouldn’t get there in time. I felt such a sense of relief when I was finally on a bus and even more relief when it started moving. We arrived at the athletes’ village, I step off the bus, and feel a slight soreness in my calf. What the fuck? It was out of nowhere. I haven’t had any cramping or soreness in recent days and now I was concerned I would be faced with cramping during the race. But I didn’t have time to worry about that because by the time I had walked down to Athletes’ Village, they were already calling my wave to the corrals. I quickly used the bathroom, ditched my throwaway clothes, sunscreened my face (of course getting some in my eye), and made my way to the start line, a .7 mile walk. I wanted to hit the bathrooms again on the way but I looked at the crowd and looked at my watch, looked back at the crowd and figured I would rather make sure I start on time and use a bathroom on the course if needed, rather than start late. So I continued to make my way to my corral along with thousands of other people. Where I proceeded to get slammed into head-on by a runner running against the crowd. Luckily she didn’t knock me down and I wasn’t hurt. But between that, my sore calf, my burning eye, and the lateness/rushing (I got to my corral with just 6 minutes to spare), I felt like this day was not off to a great start and not at all how I wanted my Boston experience to go. I typically cry at the start lines of marathons. All the hard work it took to get there, and the luck of staying healthy and uninjured, I’m always so grateful to make it. But today I didn’t have time for any of that. I didn’t have time to breathe, soak it all in, reflect on what it took to first qualify and then to make it to the start line. I was pretty much literally off and running.

All of the frustrations disappeared as soon as we were off. I started running and forgot about everything but the fact that I was now a Boston Marathon runner. I had three goals for this race: 1. Make it to the start line, hopefully uninjured and healthy. 2. Finish. 3. Have fun while doing it! I had no time goals. Goals for my recent previous marathons were to qualify for Boston so once that was achieved, the pressure was off and I could just enjoy the 26.2 mile party. And a party it was! Boston has crowds like no other marathon I’ve run (including New York and Chicago) and they truly carried me through at times. I made sure to have as much fun as possible. I gave as many high-fives as I could, especially to the small children, tapped all the power-up signs, danced to the music, cheered back to the crowed, yelled multiple times to the supporters “best day ever!” Nothing makes you feel more like a celebrity than wearing your name on your shirt when running the Boston marathon. I had hundreds of friends cheering me on. Especially during the hills. There was no way I was stopping when someone told me directly to keep going! At one point a runner right in front of me turned around and said her name was also Erica so was loving running near me. I had Ariella on my back as well and several runners blessed her, blessed me, said they were going to run for her, and hearing her name made the race even more special.

The run went well for the most part. Boston has a downhill start and I was careful not to go out too fast. I kept a pretty consistent pace (which would have been a PR) until mile 17ish. That’s among the 4 Newton hills and I expected my pace to slow. I was thrilled to crest Heartbreak Hill knowing that while there were still hills after that, the rest of the course was generally downhill. But despite the many, many, many hills I ran in training, I was not able to really recover after the hills and regain my pace, or my quads which were burning from the downhills. By mile 21 my legs were dead and my quads were screaming. It didn’t matter. I knew I was going to finish this race. I pushed through. Just keep running. Less than 50 minutes, less than 30, less than 20 and I will be finished. The famed Citgo sign with just one mile to go. The deafening roars of the crowd. I can do anything for a mile. And then…all of the training and attempts to qualify, all of the months of anticipation, the hundreds of miles of running led me here, to these two iconic turns; right on Hereford, left on Boylston. Chills. The last stretch. The crowds several rows deep. The noise. The finish line. So close. And So. Far. Away. This .35 mile stretch felt long even after the 5K. After running 26 miles the finish line didn’t seem to get any closer. In fact it seemed to be moving further away. Somehow my legs kept going. I wanted to run hard and fast to the finish but it just wasn’t possible. After what felt like much longer than .35 miles I reached the finish line, threw my arms in the air, and then started sobbing. I was a Boston Marathon finisher! I did not get a PR but I had the incredible time of 3:33:33, a sign to me that Ariella was with me, carrying me, helping me through. I don’t have the words to explain all the emotions running through me. Elation, accomplishment, and some sadness. That doesn’t begin to cover it. I made my way through the finisher area, hobbled to the bag check, grabbed my gear, and finally put on that earned blue jacket.

I went to Boston by myself but I have “family” there (the ones I stayed with the first couple of nights). I was invited to their nephew’s celebration party as he too ran the marathon. But I was more than invited. I was included. They even added my name to the cake. I felt so lucky I had such amazing people to celebrate with. What a special end to an unforgettably incredible day.

I am still riding that high from the race and am happy to have a short break from training. My next marathon is Berlin in September. I have said many times it will be my last. I am looking forward to running again for the sake of running, not towards a specific goal. And if you had asked me at mile 21 I would have said I don’t even want to run Berlin! But a few days later and I can walk stairs again, and well, my time qualifies me for next year with a pretty large buffer so… ?

I don’t know how to adequately describe what makes Boston so special. It’s the liveliness and electricity of thousands of runners taking over the city. It’s the city and the towns embracing the runners. It’s not just an event happening in a city, it is a city-wide event. It’s Marathon Monday. It’s the history. It’s the neighborhoods you run through. It’s the camaraderie. It’s the course profile. And most importantly, it’s the spectators. I can only think of a couple areas along the course that were quiet, and those stretches were short. The support is second to none and got me through some tough miles. All three goals achieved.

I’m a wreck. Sad and fatigued and irritable. I mentioned last post about my reaction over spilled milk. Well now imagine my reaction to smashing a nearly full bottle of olive oil on my kitchen floor. First I just stared at it in disbelief and then I sank to the floor and hysterically cried (to be fair olive oil is expensive and a bitch to clean so I may have had the same reaction at any other time of my life). I was paralyzed by the overwhelming mess and could not process how to even begin the cleanup. Kind of like my life these days.

The body remembers. I’ve been crying for weeks, many times with no obvious triggers. Out of nowhere I just start to feel sad and start crying even when I’m not thinking about anything in particular. Even on beautiful, warm sunny days when I should feel light and free. My body has memorized the trauma. It’s etched into my cells and bones, shaping the essence of who I am. So even when I try to forget, my body won’t let me.

Every year this time I breakdown. And every year I come out of it. But before I begin to recover I sink so low that it feels like I will never be able to dig my way out of this hole. Even though I’ve been here before and intellectually know that I will ultimately be okay once again, it doesn’t feel like it. I’m currently in a place where I feel hopeless and defeated. Alone. Missing the person I used to be. I find myself retreating, pulling away, trying to hide. I don’t feel good. In fact I feel pretty fucking terrible. Broken.

I have some things approaching that I should be looking forward to, but I am finding it hard to feel excited about anything. I’m generally either apathetic or sad. It’s a pretty bleak way to be. And I’m so tired of feeling this way.

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.