Tag: childhood cancer

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Vacation

I’ve been wanting to write about my vacation since we got home but just hadn’t gotten to it. Not sure why. I had plenty of time considering my winter break was extended but for some reason when I have nothing to do it’s even harder to be productive. As much as I did not want the extended break because those days will be added to the end of the school year, it was nice to be home with nothing to do. But now, with this snow day I am officially bored and figured it was finally time to write about our trip.

As always, it feels good to get away. It doesn’t lessen the pain of missing Ariella but going to a place that is not fraught with memories helps to soften the edges of grief. We started our vacation in Delray Beach, FL where we got to spend time with my aunt and David’s grandmother. We don’t see them enough and it was good to be with family. We didn’t have to put on any kind of act or brave face, we just had to enjoy each others’ company. I made sure to get my run in, we paid a visit to the beach, and had some tasty meals (Chinese food on Christmas Eve; can’t go wrong there). But mostly we were just together.

On Christmas day we headed to Ft. Lauderdale to spend the evening with a friend and her girlfriend. I have mentioned before about how grief changes relationships in many ways. Some relationships don’t survive but others grow and you find people there for you that you wouldn’t necessarily expect. This friend we visited wasn’t a close friend. We all went to school together but our relationship didn’t really go beyond that. But she has reached out sincerely many times since Ariella died and we have learned that she will always be someone we can rely on for support. We had a nice evening on her roof just shooting the shit and enjoying sushi and again just hanging out with no expectations. The thing about making or growing friendships after a traumatic event is that they don’t know who you were before so they can’t see how you’ve changed. No pressure to be the carefree people we were before.

After our visit with our friends it was time to head down to the keys. We spent a night in Key Largo where I got David on a paddleboard and we had a brief visit from a manatee. The place we stayed was a neat little resort with our own little bungalow right on the beach. We had dinner on the water, I of course got my run in the next morning, and our entire stay was peaceful.

Finally it was time to head to our final destination, Key West. The drive was easy and while we had a great trip until then, it was nice to know we were going to stay put for a few days. There was a stark difference between Key Largo and Key West, with Key West bustling with much more activity, especially in the downtown area. We did all the touristy things; the southernmost point of course (David made me wait in line for a picture, I would have been happy taking a picture at the southernmost bar) and next to that was a menorah so we decided to take a picture as the southernmost Jews as well, the butterfly conservatory where I had a friend land on my head, sign from Ariella? It did land where a unicorn horn would be…, Hemingway’s house with the many 6-toed cats, Truman’s Little White House, and of course meandering along Duval St.

We were certainly not idle in Key West. I continued to get in my runs which were so nice to do along the water with flat terrain. It was hot, even early in the morning, but it was great to not have to think about what to wear or layer up and I could just enjoy the lovely surroundings. We went kayaking through the mangroves one day where we saw manatees, nurse sharks, and lots of jellyfish, and spent hours biking around the island another. We saw a beautiful sunset with three birds (another sign from Ariella) and took a ghost tour where we learned about the darker side of the island’s history.

Though we kept busy we also were able to relax by the pool and just enjoy the calm. That’s not to say there was no sadness this trip. Though this was not a place we had been before it was easy to imagine Ariella there with us. We would have spent hours in Hemingway’s House to see all the cats. She would have stopped to pet every dog that passed by. She would have been on the paddleboard and kayak and ridden her bike alongside us (who am I kidding, she would have left me in the dust on the bike-that kid was fearless). She would have been in awe at the butterfly conservatory and the ghost tour would have been her idea. Watching other families have amazing vacations feels like a sucker punch right in the gut. This vacation was proof that joy can exist with sadness and pain but those moments of happiness are fleeting and the pain often overrides.

Our trip home was a clusterfuck from the moment we arrived at the Key West airport. The security line was the length of the airport, the departure board wasn’t updated regularly, and I don’t think a single flight took off on time. The waiting area was standing room only and barely even that. We were cutting it close for our connection but would have made it had they been able to get the jetway to the plane and open the door in a timely manner (took at least 15 minutes after we arrived at the gate). We sprinted to our gate with ~10 minutes until departure (reinforcing that sprinting and distance running are two very different beasts and I am not a sprinter) to find the plane still there but the gate closed. We were both furious because we were on the ground while the flight was still boarding and there were 5 of us trying to make that flight. They should have held the plane. Anyway, they didn’t and fortunately we were able to get on a flight a couple hours later. We made some friends that had also missed the connection and had some food and drinks in the bar. Ultimately I think missing our flight may have been another sign from Ariella. While in the airport in North Carolina I texted a friend that we met at our bereaved parents retreats that we have gotten close to. They live in North Carolina but I knew they had been away as well. I was curious if they were still on vacation and it turns out they had just landed when I texted! Not only that they were deboarding at a gate right by ours. So we got to have a lovely, albeit brief reunion in the airport. Most of the vacation it was nice to be just us, not the bereaved parents. But there were times I wanted to shout “MY CHILD IS DEAD!” It is just so surreal to do “normal” things with others having no idea of the turmoil inside. So seeing our friends, this beautiful family in the airport, gave me that brief moment of being with someone who just knows and who feels the same, without having to talk about it. So maybe I needed that and maybe that’s why we missed our connection (sorry to the others who missed that flight!). We left with plans for a weekend together in the near future and then finally made our way home.

This was a much needed getaway and did both of us a world of good. The pain doesn’t go away just because our location changes but being out of normal routine in a place that doesn’t have memories tied to it is certainly a refreshing change.

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Retreat (Part 3)

This past weekend was bereaved parents retreat part 2 (welI really part 3, since David and I had been to two prior, but this was supposed to be part 2 of our most recent retreat this past August). I wasn’t sure I was going to blog about this past weekend because the retreat didn’t go as anticipated and I don’t want to upset anyone. When we met in August, so much time was spent sharing our stories that we didn’t have any time for workshops and to talk about specific topics. Many of us expressed that we would have liked more time for those kinds of things and so our incredible host invited us to continue the discussion at another retreat. My dissatisfaction with the weekend is not at all the fault of our host as she also was disappointed to hear how it was going for those of us who had been there in August and did everything she could to help us get the most out of it. If you are reading this, I want you to know that I appreciate so much being invited back and am grateful for the opportunity to once again be in a place where we could just be raw and authentic without judgment. Though it wasn’t as expected and not what we came for, there were many beautiful poignant, and meaningful moments that carried me through.

We headed down on my birthday. I don’t really acknowledge my birthday, don’t feel like I have much to celebrate other than it’s one year closer to being reunited with Ariella. I typically ask for signs from Ariella on my birthday but even forgot to do that. At the end of the day I was feeling bummed that I had not received a sign from her, but then I realized two things happened that could be construed as signs (as much as I look for signs I am still skeptical). The first was that a friend asked me if I gave Ariella my middle name (Joy) because she saw a sign at a restaurant that said “Ariella Joy”. That isn’t her middle name but the fact that it is mine and that Ariella is not a common name, prompted my friend to text me, so it could have been Ariella saying I’m here on your birthday. The second event was on the plane. Never on a single flight that I have been on has the flight crew asked if it was anyone’s birthday. The one time it occurred it happened to be my birthday (plus two others on the plane). So an entire plane of people sang “Happy Birthday” to us, with one person singing the cha cha chas, which Ariella always did as well. Ariella hated when people sang to her but loved it when it was for others (she told a restaurant that it was her cousin’s birthday so they would sing to him even though it wasn’t actually his birthday) so getting an entire plane to sing would be up her alley. And though not a sign from Ariella, I received a lovely, thoughtful gift from a friend at the retreat which both made me smile and brought tears to my eyes. A beautiful reminder that we are all here for each other for the hard times and the celebratory moments that are tinged with pain.

So the retreat. I’m not going to go into significant depth here. There is a sense of liberation when amongst a group of people with shared grief and experiences. Freedom from pretending to be okay, freedom from hiding our pain, freedom from worrying how your own grief will affect others, freedom from judgment. As soon as we were with the others it felt like instead of being suffocated by grief, it was shrouding all of us, together. Still there but a little lighter since it was spread more thin. There is relief in being able to share that burden. This coming together was ultimately what this weekend was about so in the end, it was worthwhile and meaningful, even if it took a bit to get there.

Those of us who had been at the retreat in August were expecting more conversation and workshops or breakout sessions. There is so much power in sharing our grief stories but it is also very emotionally taxing. While some weight is lifted when sharing your own story, that happens because everyone else begins taking on that grief, sharing in the burden. And many stories mirror our own, triggering the memories of our hardest times. Sending me right back to the hospital room. The tubes and wires. The beeping of the machines. Ariella’s pain and fear. Her last breaths. There is value and purpose in sharing stories, but we had done this before. We were expecting to discuss topics such as grieving differently from your spouse, changing roles, new identities, finding purpose, getting coping skills. We were looking for facilitated discussion with specific focus. And unfortunately for us, that isn’t what we got. I do not by any means want to take away from the experience the others had in sharing their stories. They hadn’t done this before and it is so important to be able to share without judgment, without interruption, to just say everything you need to say. With this retreat there were basically two groups, both with people who knew each other in some manner but one group who had done this before and one who hadn’t. That makes it difficult to make full group activities meaningful for everyone.

One of the planned activities was making a craft to represent our child and then sharing with the group. Crafts are not my thing and this was something I was not comfortable doing. Some others also chose not to do this so we were able to take that time to facilitate our own discussions. And this is what made the weekend so powerful for me. This wasn’t just conversation, it was sharing our thoughts or feelings on very specific topics and giving advice if asked, or just listening if not. It was understanding that we are not alone, not just in the shared trauma of our children dying, but in ways that we react and live and avoid and hide and cope and survive. The pain bereaved parents endure is scary. The dark, dark feelings are terrifying and knowing that others have felt the same and have come out of it allows us to have those feelings while reassuring ourselves that they won’t last forever, we will survive them. Our host encouraged us to do what we needed to get the benefit of the weekend, so we were able to talk without guilt and could just take the time to make the weekend meaningful for us. In those discussions bonds and lifetime friendships were strengthened.

During our discussion one of the moms said she looks for “micro-therapeutic moments.” Basically finding those moments or events, no matter how tiny, that are helping us to move forward. I am doing things to help me find some gladness and purpose, but I was never looking at them like that. Seeing them in a new light, to understand that they aren’t just keeping me busy but are helping me to find new meaning and grow as an individual and as part of a couple. Reminding myself that it’s okay to see beauty amongst pain, that it’s okay to not let myself suffer.

I was unsettled by the assumption of Christianity in this retreat (not by the host but by the organization facilitating the activities), in some of the activities and in some of the gifts we received. There are many bereaved parents that find comfort in religion (whether it’s Christianity or something else) and sometimes I am jealous of that faith. Maybe having such strong convictions would bring me some comfort and peace. There are others who are now very angry with G-d and are trying to reconcile that anger with their religious beliefs. I pretty much have given up religion since Ariella died. I find no comfort in it, and instead have a lot of anger. And I’m Jewish. So getting gifts that talk about Jesus and G-d and have Christian prayers really rubbed me the wrong way. This was not a faith-based retreat and not everyone is Christian. Having resources available for those who wanted it or having a specific breakout sessions to discuss religion and grief would be a nice way to incorporate religion without assumption. I did not for a second feel like it was being pushed on me or that I was being preached to, but in a retreat that is supposed to be for everyone I did not appreciate the assumption that everyone there was Christian.

I am glad we went to the retreat but it will likely be our last one for a while. My favorite moments were our self-facilitated breakout session and then just the moments when we were hanging out and talking about nothing in particular. I felt a little lighter when we got home knowing this wouldn’t be the last time I see some of these people and knowing that I can send a quick text to someone who “gets it” when I’m feeling particularly down. In the end I was able to share without judgement, remove the mask, and find some comfort.

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Grief is a Stealthy Bitch

The definition of grief, according to Mirriam-Webster: deep sadness caused especially by someone’s death. Seems quite simple. Grief, however, is anything but. Especially when it is the complicated grief of an out-of-order death, such as the death of a child. Sadness does not begin to describe the feeling of this grief. And grief changes as time goes on. It doesn’t go away. It is ever present, but not always as oppressive as it once once. It was almost easier in the earlier days. You expect to be in pain all the time. You expect to want to wallow, you expect to cry multiple times a day. You expect to be sad and broken and shattered. Grief isn’t surprising. It’s a part of you now. And though the pain is unfathomable, you know what to expect. You aren’t blindsided on a daily basis. It just, is.

As time has gone on, though the pain is still very real, I have moments where I am no longer completely consumed by grief. And this is hard. Because I don’t know when those tidal waves will appear full force, knocking me down, washing over me, threatening to drown me. several years ago in 2015 Ariella and among with some great friends discovered an acai bowl place in New Jersey, when we were there for a dance competition. We went at least three times and though there are similar places by us, none that compared to the place in NJ. Well they just opened one up in my area and I decided to head there opening day. There was a line out the door as expected but it was a cheerful mood, a sunny day, and a DJ playing some tunes. While I waited there were 3 songs played in a row that I always connect to Ariella; “High Hopes” because she loved that song and always sang it at the top of her lungs, “Shake it Off” which she danced to during the very weekend in NJ where we discovered these bowls, and “Better when I’m Dancing” which was her tap solo when she could finally dance again., and the last dance she ever performed on stage. This song was also playing as she took her last breaths. I’ve heard all of these songs many times since Ariella died but for some reason this day, the tears instantly hit and I could not stop them. There was chatter and laughter all around and here I am with tears streaming down my face. Grief is a stealthy bitch.

Grief is unpredictable. It’s hard to make plans. I worry I will regret it later. I’ve learned that I need to make sure I have my time to myself. We’ve had so much going on lately it’s been exhausting. But by continuing to run and cycle I’ve kept that outlet I very much need. And if I’ve learned nothing else in living with grief, it’s essential to do the “self care.” I do not like the term self-care. We all know self-care is important but I think it is such a buzz word now that it has lost meaning. I know in my job for example, we have professional development sessions on self-care when that time could be much better spent getting actual work done. When it becomes a chore, it’s no longer self-care. But anyway, we do need to take care of ourselves and that is especially true for person grieving and in pain. All that to say, sometimes I just can’t make the plans. I just can’t go see people. Whether it’s because I’m just exhausted by interaction (as an introvert by nature this was the case even prior to Ariella dying) or because it’s just something I cannot face (I have not been able to attend any of the Bar Mitzvot we have been invited to), I am not able to put myself in situations that I can’t easily escape. When I’m seemingly “fine” grief comes along and kicks my feet out from under me and I’m often trapped in my current situation. I never know when that may happen. It was easier when grief was just there, smothering me but leaving me with no question as to what to expect. And the stages of grief are crap. In fact, they were not described for people who have lost loved ones. They were defined for people who were the ones actually dying. So to expect to follow specific stages just makes it all the more confusing and overwhelming for those grieving and their loved ones.

We ended up having to put our dog, Sherman down. And while Sherman is not a person, taking care of him was very reminiscent of taking care of Ariella. David and I taking turns sleeping on the couch so we could be near him, help him outside, help him settle down, just like we took turns staying with Ariella in the hospital. Waiting for test results, trying to make sure he wasn’t in pain, talking to the vet about quality of life. Making the gut-wrenching decision and holding him as he took his last breaths. We had been there before. With our child. And while I never forget any of it, it brought it all back to the forefront. We should not have to grieve another loved one so soon. Especially the pet we got in our grief, to give us some purpose, to give us someone else to love. Losing a pet is NOT the same as losing a child (it really burns me up when people say that) but it is still a heartbreaking loss and just felt so horribly unfair after everything we have been through and are still going through.

You’d think that those who have been through the worst, would get a free pass for the rest of life. But we all know the universe doesn’t work that way. So life is now spent expecting the worst, waiting for the other shoe to drop, wondering what will go wrong next. It’s a pretty sad existence, but well even though people further along in their grief say there will be joy again, I have not yet found it. I have found enjoyment in moments but not happiness in everyday life.

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Shoes

1,800 pairs of shoes were displayed at the Washington Monument as part of CureFest, representing the 1,800 children that die from cancer each year. Those shoes held 3,600 feet that once walked or ran or crawled or were carried (babies get cancer too) on this Earth for far too short. They are no longer here but the shoes remain to tell part of their story. Did they walk or did they run? Were they still in the crawling stage or were they an infant, needing to be carried? Did they play in the mud and jump in puddles on a rainy day? Did they doodle on them when they were bored in school? Did they prefer comfort to fashion, or fancy to casual? Were they active or laid back? Or did the shoes just reflect their favorite color or character? Whatever the shoes said about their owner, their personality was reflected in some way. These shoes traveled to hospitals and clinic appointments. Went to schools and back. Provided some sense of freedom when their owner would run in them. These shoes climbed jungle gyms, hiked trails, pedaled bicycles, rode scooters, jumped on trampolines, kicked soccer balls, danced, skipped and galloped. Maybe traveled the world or maybe stayed close to home. Whether they traveled hundreds of miles or just a few, or none at all, these shoes held the feet of 1,800 brave souls who were taken way too soon. These shoes are now still. They sit, unworn, empty. Nothing but a reminder of the lost lives they once adorned.

When I went through Ariella’s things not long after she died, there were some things I just could not part with. Among those items were were two pairs of shoes that were Ariella. Ariella was all about comfort. Sweatpants and oversized hoodies and t-shirts. Perfect with her Uggs. They were cozy and easy to put on and went with everything. Ariella was not a dress and skirt kind of girl. She agreed to wear a dress to a Bat Mitzvah if she could get black Chuck Taylors to wear with it. And she did. And that was Ariella in a nutshell. Often a contradiction but she didn’t take herself too seriously and didn’t care what others thought.

How fitting that the Uggs are in the picture also. The Uggs experienced many adventures with Ariella. The Chuck Taylors not so much but both of those pairs of shoes represent distinctive parts of Ariella’s personality, and I don’t think I will ever part with them. Death changes your perspective of everything. Something seemingly so meaningless as a pair of shoes represents so much more than we would ever consider. As noted above they represent lives lost from cancer. Beautiful souls that were extinguished. They represent the lives that were and the lives that will no longer be. These kids did not grow out of those shoes. They never had the chance.

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CureFest and More

It has been a very rough end of August and September. I’ll go into the whys in a bit. I want to write about CureFest while I’m still processing and it’s still fresh in my mind. For those that don’t know, CureFest is a powerful weekend of advocacy for childhood cancer awareness. There are speakers, performances, rallies, and families. Families still with hope, and families that have been destroyed. If you are new to the blog you can read about our previous CureFest experiences here; https://lifeafterchildloss.net/curefest/

CureFest is both terrible and beautiful. It’s harrowing and poignant. Filled with hope and despair. But no matter who you are and why you are there, it’s a weekend filled with extreme emotion. Friends reuniting, bonds being forged, a family reunion. Because they are our family. My favorite CureFest memory was in 2018, our first time attending. Ariella was looking forward to seeing her friends Ava and Emma that she met a month earlier. When they saw each other it was pure joy. Arms spread wide, huge smiles on their faces, they ran to each other full speed and embraced in a tight group hug. Ariella had an incredible support group here, but Ava could be described as her soulmate. They both “got” each other immediately and formed an instant connection. They could just be themselves, no explanation needed. This was what CureFest was all about for us. That connection, the support, the smiles, and the hugs. Even though Ariella was in treatment for her relapse, we felt the hope and it was contagious. We felt for the bereaved families and were grateful it wasn’t us. We knew it could be yet we were so sure Ariella would be fine. It was an emotional but mostly joyous weekend.

This year one of the first families we saw were Ava, Emma, and their parents. The girls ran over to us to give us hugs and we hugged our friends and all I could see was Ariella running to the girls with pure love and joy. And my heart shattered even more. Because I knew the girls were feeling the same way. Missing Ariella. We actually weren’t even planning on attending this year. It wasn’t on our radar, we had so many other things going on, and it’s a hard, terribly hard weekend. But we were asked to come, to have a table and give out bears for the children to adopt. So we talked about it. And decided attending was the right thing to do, but for our own health to attend just that evening. It is very different being there as a bereaved parent and life has been so hard I couldn’t let it take a further toll on me. But I’m glad we went. To see the happiness on the kids faces when they got to make their very own Ari’s Bear to bring home. And not just the young kids, but older kids and teens as well. To meet the families who are still fighting for their kids and advocating for research. To meet the other bereaved families, some we knew from following their stories and some meeting for the first time. To keep Ariella’s legacy going. And we even had a sign from Ariella, if you believe in that sort of thing.

All in all I’m glad we went and I’m glad we left when we did. I know the rest was beautiful and sad and moving. There was a vigil and a shoe display (1800 pairs of shoes to represent the number of kids that die from cancer each year) but I’ve lived it. All of us there, lived it, are living it, will be living it forever even if their children survive. I don’t need to physically see it to understand the enormity of childhood cancer’s devastating effects on families. The people that really need to see it, to grasp, are the ones that aren’t there. CureFest is wonderful for bonding and crying and sharing and supporting, but it’s preaching to the choir. We still have so far to go to make that awareness far reaching so that the world takes notice. So while touching and heartfelt and necessary, it’s also quite frustrating.

Fall is always a difficult time of year, and this year is no exception. In fact, it’s much worse. I have never hated the start of a school year so much. In part yes because Ariella had her last first day at 6th grade. This year she should be in 9th grade. A high schooler. No more first days of school for us. But I work in the schools and my start to the school year has been simply awful. And I know I’m not the only one who works in schools feeling this way. For the first 2 weeks I literally almost cried no less than 3 times. And I do mean I was at the point where I was fighting back tears. A long story that I don’t think is necessary to go into, just to say that related service providers tend to get the short end of the stick, not treated as regular members of the school staff, not treated with the same respect. Life is already so hard and I am just over it. And I can’t even blame it on the pandemic. Not really. Some of it is indirectly due to the pandemic but mostly it’s crap administration and ridiculous policies and protocols and lack of communication. It is all just very overwhelming and I usually want nothing more than to curl up with a blanket over my head and block all of it out.

On top of all of this, our dog isn’t doing well. He’s young, only 4. Overnight he had a complete personality/behavior change. Vet so far found nothing wrong but had given antibiotics and steroids. Stopped the steroids but they may still be lingering in his system so we aren’t sure yet what is now side effects of meds and what is original condition. But I’m inclined to believe whatever his condition is has gotten worse. And I don’t think I can handle this. But of course I can. I’m living through much worse. But still. You get pets knowing they aren’t going to be with you forever but you also expect to have a pet longer than a couple of years without health issues. Sherman is the dog we brought home because I needed company after Ariella died, when David was at work. Sherman is the dog that forced me out of the house and into fresh air because he would need to be walked. Sherman is the dog that came with a big giant bear. If that’s not a sign he should be with us, I don’t know what is. Sherman is the sweetest, least needy dog and it’s breaking my heart that he can’t tell us what’s wrong. That he doesn’t feel well but he doesn’t understand why. That he can barely walk right now, that he can’t jump up on the couch or bed with us, that he is agitated and restless and scared and can’t calm down. When we brought Sherman home the quiet in our house wasn’t so deafening, the house didn’t feel quite as empty. I had someone to pay attention to. Maybe I’m jumping the gun, maybe, hopefully, whatever his issue is, is fixable. But I’m no longer an optimistic, hopeful person and I can’t help but to jump to worst case scenarios. I’m in this position again of being scared and worried for someone I love and though it’s not the same, it still hurts. Especially with a helpless animal who loves unconditionally.

As always, writing and exercise are my outlets (even though I don’t post as much I write all the time) and I did a thing. I have been a runner off and on since high school, but started more in earnest in my late 20s/early 30s. I used to run in a lot of races but then stopped for a while just because I didn’t want to do them anymore. After Ariella died I needed movement. I felt itchy and restless, and it was all I could do to keep from pulling my hair out and scratching at my skin, screaming at the top of my lungs at all hours of the day. I started walking Sherman. And then went back to the gym. And then began running again. In 2020 I signed up for a 10 miler which went virtual because Covid. I wasn’t going to run virtually but I was brought back to spring after Ariella was diagnosed. We had signed up for a cure Sarcoma fun run. Ariella was so sad that she couldn’t run, that she had to walk. She felt left out and was looking forward to the day she could run again. So in June 2020 I ran my 10-miler for Ariella and everyone else that couldn’t. Began training again and though I said I was probably done racing, when racing came back in person earlier this year, I couldn’t pass that up. And running has helped me in other ways. I am currently volunteering for the Ulman Foundation for their Cancer to 5K program. I’m getting to do what I love amongst a very supportive group of people. And it’s pushing me to get out more, meet new people, something I was always anxious about and even more so in my grief. Running was always a solitary sport for me. I like my alone time, I need it, and running was perfect for that. I almost never ran with others. But since volunteering my eyes have been opened to how great running with others can be as well. I have a friend training for the NY Marathon and I ran 20 miles with her on Sunday. Which brings me to the thing I did that I mentioned at the beginning of this paragraph. The 20 miles flew by when running with a friend (the first 12 were with a few others as well). Sometimes we talked, sometimes we were quiet, but we were always there to offer support. And the 20 miles never felt out of reach. So I decided to upgrade my Baltimore half-marathon registration to the full marathon. This will be my fifth marathon, my first since 2005. But it is the one I feel most prepared for. I don’t have plans to run with anyone in particular but my goal is to ditch the headphones and make friends along the way. And I am trying to let go of any time expectations other than to finish faster than my last (and fastest) marathon. The race is October 9.

I know this post was kind of all of the place but that’s my life and my thoughts these days. I will be sure to update on Sherman once we know more. As always, thanks for reading and please share with others you think this may help. I write for me but I post to hopefully help others realize they are not alone in their grief.

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Southwest Hope and Healing Bereavement Retreat (Part 2)

Seems as if I start most posts the same way lately, that I haven’t blogged in a while. I write almost daily, even if just a line or two, but nothing that feels worthy of sharing. There just doesn’t seem to be much point. I don’t do very much, especially now that it’s summer (which is sadly nearing the end) and my emotions and motivations or lack thereof haven’t changed very much. I am by no means the only one going through a difficult time and with the grief, loss, fatigue, and malaise surrounding covid, I haven’t felt right putting all my thoughts out there. I do know anyone reading this wants to hear them, wants to know how I am really doing, but much hasn’t changed for me. Just plodding along, trying to survive day by day.

For those that have been following my story since the beginning or close to it, will have read about our experience with a bereavement retreat that we attended in Arizona just 3 months after Ariella died. If you haven’t read that post you can find it here: https://lifeafterchildloss.net/the-retreat/ The retreat was for parents whose children have died from cancer and it was a heavy, poignant, in some ways beautiful, and therapeutic weekend. So when given the opportunity to attend again, we booked our flights without hesitation.

This year, in anticipation of the emotions and heartbreak, and the weight of shared grief that we knew was ahead, David and I decided to travel to Arizona a day early and just take some time for us. This time we knew what to expect and we knew how incredibly hard it was going to be, and we wanted to ease into it. So we once again travelled across time zones, into a desert landscape with a hot climate (but it’s a dry heat!) and took in the beauty of our surroundings while preparing for the work ahead (and facing grief head on, sharing stories, meeting other bereaved families is indeed work). We spent our first day and night at a beautiful resort, having some drinks at the pool, getting in some exercise, and doing some hiking. The the desert can seem quite unforgiving but the scenery is picturesque and the beautiful surroundings add a sense of calm and peace.

Our grief clings to us like an unwelcome visitor and yet being away from home provides some relief from the ever present suffocating feeling. It felt easier to breathe, easier to move, easier just to “be”. At least in the day prior to the retreat. Whenever I’m away from home I look for signs that Ariella is there with me and this trip was no exception. I choose to believe she was there in the butterflies that kissed my arm and flew all around us on our hike. There were so many things Ariella would have loved about that hike we took (and a few she would have hated) and I wish she was there with us. Of course if she could have been there we wouldn’t have been there at all. We crashed early that first night due to the time difference and of course were up ridiculously early the next morning, which gave me plenty of time to get in a run. Some things don’t change and I continue to need to exercise to manage my anxiety. I do love running in a new place and this was no exception, though I planned poorly and went downhill for the first half of the run, meaning the second half was straight uphill. But I beat the worst of the heat and it was a good start to what I knew would be a challenging day.

Onto the retreat. Though we had done this before and knew what to expect, there was still some anxiety about what was ahead. But I needn’t had worried. Going into the dinner, decorating our candle for the candle lighting ceremony, and talking with other bereaved families, was like returning home. Some families we knew from the previous retreat, some we knew from a virtual retreat we attended, some we knew from following each others’ stories on Facebook, and some were complete strangers. But in the bereaved parents of childhood cancer world there are no strangers. We all have this one tragic thing in common and that makes us family. There is no better support than another parent who knows just what you are feeling. That dining room at that ranch in the heat of the Arizona desert was where we belonged. I haven’t felt such a sense of belonging since the retreat in 2019 and I didn’t realize I needed it until I was experiencing it.

This was a very difficult weekend. We shared our stories. We shared them without fear of judgment, without getting cliches and platitudes in return, and without toxic positivity. We didn’t censor ourselves and we didn’t worry about making others uncomfortable. We were just heard. We were seen. We listened, without distraction, even though our stories were often similar and brought us back to our own nightmares. We talked about our children and our loss and our grief in a safe space and that is a rare thing for bereaved parents to be able to do. Grief is ugly and messy. It’s disorganized and scary and oppressive and stifling, but being able to share that grief with someone else is beautiful. And I have found that sharing others’ grief helps to lighten mine in the moment.

When we first showed up at the retreat I was asked how it was different now, 2 years later, than it was when we were still so fresh in our grief. I replied that I wasn’t sure but that it didn’t feel quite as raw and that I could now talk about Ariella without crying. Except that as soon as I started to share, I started crying. And I realized that this is still new. Two years later and I feel like I am still learning to navigate this world without my beautiful daughter. Though it’s easier for me to get out of bed every day, the loss feels much heavier than it did initially. Because the numbness is gone and reality hit that this is truly forever. As the months tick by I am reminded of all the experiences Ariella missed out on and will continue to miss out on, and all that we will miss as her parents. Ariella should be starting high school next week and developing crushes and becoming more independent with her friends. Instead friends that were younger have now surpassed her and they are experiencing the milestones she never did. This really does not get easier. I guess the difference between now and then is that I know that I will survive, even if I don’t want to.

Connections were made once again and we are lucky to have yet another opportunity in the next few months to meet with these families again, this time in Florida. Many felt there wasn’t enough time in this retreat. I think there were enough days, but we spent so much time sharing our stories (which is a necessary thing) that there wasn’t time for a facilitated session. I expressed a need for more workshop type sessions such as for self-care, and more time just to be with the other families. Others expressed similar. And our gracious host generously has arranged one more retreat for the same families and already I’m looking forward to seeing everyone again. Because those are our people.

  • Blue Orb… Ariella?
  • David taking a selfie of the 2 of us…
  • Rainbow in the Pic.. a sign?

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Scattered

I have been working on this post for weeks. I’ve wanted to write. I’ve needed to write. And yet I can’t put thoughts to paper. There is just too much going on in my mind. This time of year, back to work, doing my job virtually. I have a thought and then the thread just splits and splits again, and spreads, and spreads, forming an incoherent web. As a result, this post may be disjointed.

I finally got it together to write because of the date. Almost four years ago, in October or November of 2016, we had to look ahead and imagine what we would be doing four years later. We were sitting at Ariella’s Hebrew school, listening to the rabbi talk about bar/bat mitvah and choosing a date. Now Ariella was young for her grade so while most would be choosing a date for closer to 3 years from then, we were looking at closer to 4 years, just after starting 8th grade. It was a daunting task. Choosing such an important day, Ariella’s bat mitzvah, so far in advance (some schools don’t do this so far out but it seems more and more are scheduling b’nai mitzvah quite far out). Who could possibly know what would be going on on a specific day 3 or 4 years later? We put a lot of thought into the date, considering the time of year and dance season. Ultimately, since Ariella was young for her grade we wanted to wait until she was closer to 13. So we picked a couple of days in September 2020 ( only a couple to choose from because of the Jewish holidays) and one in I think January or February 2020, before dance competition season. We got our second choice, which was September 26, 2020. Tomorrow. Four years ago, when we weren’t sure what we would be doing, we would never have thought in our wildest imagination that instead of celebrating with Ariella, we would be grieving for her. We also of course never imagined we would be in a pandemic and her bat mitzvah would most likely have been virtual. This probably would have pleased her. She had said for quite a while she didn’t want a bat mitzvah. But after going to a few of her friends’, she agreed that she would have one, as long as her party could be a pajama party. Tomorrow. Tomorrow she should be becoming a bat mitzvah. When we were looking ahead in the fall of 2016, we were facing the unknown, as the future always is. We couldn’t believe we were already talking about her bat mitzvah. It seemed so far away. Just two or three months after submitting our 3 options for dates, Ariella was diagnosed. A few weeks or so after that we got the bat mitzvah date. We went from thinking about planning an exciting event, to filling binders with medical information. We went from an optimistic and carefree existence to wondering if Ariella would live to see her bat mitzvah. In that time from choosing her date, Ariella was diagnosed with cancer, went through 10 months of treatment, was declared no evidence of disease, relapsed, underwent another 9 months of treatment, had a bone marrow transplant, and died. Our greatest fear was realized. Ariella did not live to see her bat mitzvah. Tomorrow, instead of celebrating Ariella’s coming of age, we continue to mourn her loss.

On the recommendation of a friend I am currently reading (finished, now that I have finally come back to this post) Option B by Sheryl Sandberg, which she wrote after the death of her husband. Our losses are very different but some of what she says resonates with me, particularly this one quote that really struck me. It isn’t Sheryl’s quote but the quote of a woman named Virginia Schimpf Nacy. Her husband died at age 53, and six and a half years after that, her son died. She said “Both deaths are woven into the fabric of my life, but they’re not what define me.” Their deaths do not define her. I sat on this quote for a while. I turned this quote over and over in my mind. I thought about what it is that defines a person. Is it her personality? Her job? Her relationships to others? There are so many factors that make a person who they are and yet the only one that matters to me is that I am the parent of a dead child. My life, my purpose and meaning, or lack thereof, is currently 100% defined by the death of Ariella. How I think and feel and react is entirely through the lens of a bereaved mother. When your child dies, when your whole reason for being dies, how can that possibly not define you? I am a grieving mother. Not a second of any day goes by that I forget that, that I don’t feel it deep in my bones. Some days, some moments, I feel it more sharply than others, but it is always there. Following me. Inhabiting me. Driving my decisions. It may not be evident to others but it doesn’t leave me. I am forever changed. Maybe I never will feel like Ariella’s death doesn’t define me, or maybe one day I will find that my identity is not solely linked to my dead child. Today is not that day. If that day does come, I do know that as the author of the quote said, her death will always be intertwined in my entire being.

I really haven’t been well. This time of year, that used to be my favorite, now just brings more sadness and anxiety. September. Childhood cancer awareness month. I feel obligated to post, to spread awareness. But it hurts. I’m bitter and resentful that I have to do it at all. Why does it fall to the bereaved and the caregivers to advocate for something everyone should feel passionate about? When all I want to do is ignore it, I just can’t. Because if it helps just one child, it has to be done. CureFest, which we attended the past two years, is virtual this year (read here for more about our experience at CureFest https://lifeafterchildloss.net/curefest/). And I am so glad. Because I really do not have it in me this year to attend. Hearing all the stories of hope and success. Seeing the amazing and strong fighters and survivors. I am happy for them. I am. Of course I want everyone to have hope and be well. But I don’t have hope. And my child didn’t make it. And I am jealous. So very jealous. And seeing the hope and strength and fight brings me back to when we were there in 2017 and Ariella was almost finished treatment. We had the same hopeful and optimistic outlook. We thought in a few months we would be among the survivors. It was a celebratory atmosphere. And I want no part of it. I would have gone. For David. For Ari’s Bears. And there are many people I would like to see. But the rest. It’s just too much.

And now October is approaching. Ariella’s birthday. She should be looking forward becoming a teenager. Crisp air and the anticipation of the holiday season, beginning with Halloween, Ariella’s favorite. Reminders everywhere of what we lost, of what we are missing. Walking into Trader Joe’s, visually assaulted by pumpkins. This time of year every time we shopped in Trader Joes’ we came out with at least one pumpkin, sometimes several. Colorful leaves on the ground, crunching beneath my feet. Memories of corn mazes and hayrides and picking pumpkins and apples. Trick or Treating. Ariella in all of her Halloween costumes. Fall is for families.

What David and I want, more than anything, other than of course having Ariella with us, is a family. We are missing Ariella and all the things we did with her and we are missing her future as well. But we are also missing being a family. Being parents. We miss all of it. Rocking to sleep, reading before bed, first days of school, vacations, game nights, helping with homework, recitals. We miss the mundane daily routines and we miss the arguments and tantrums and eye rolls. We miss everything. The good, the bad, and the ugly. We want two things that mean anything and we can’t seem to have either. And before I get the comments about ways we can be parents or caregivers or still be involved with children, please don’t. We know our options. It’s not so easy as just deciding to be parents. So we are left adrift, trying to figure out “what next?”

Couple all of this with doing my job virtually, which is making me even more miserable, and everything is hitting me quite hard. At the gym I see a news story on TV outside of Hopkins. I see the Hopkins sign and the bridge that I drove under every single day from February 25-May 9 2019. If I look hard enough I see the room in which Ariella died. That same day at the gym I hear a song that Ariella danced to. It was a group tap dance. I watched her practice many times. She never got to perform it. I have two outlets. Exercise and work. But I hate my job right now. It is frustrating and ineffective and I have headaches every day from the screen. There is a reason I don’t have a desk job. All of this to say I’m struggling, more than I had been. Year two has been a hell of a lot harder than year one. And I feel much more lost.

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So Very Tired

I don’t post much on Facebook, other than childhood cancer awareness posts. But the other day, I just felt so tired and fed up that I wrote a very long rant, which I accidentally deleted before finishing and posting. I didn’t have it in me to type it all again, which probably was a good thing. Because I am not looking to argue. I prefer to express my views and thoughts and feelings here, where people have to make an effort to read them. Sure it’s just clicking a link if I share it to Facebook, but that in and of itself is a choice, rather than maybe catching a glimpse of what I wrote when scrolling by. Some people use Facebook to share their lives and join groups and communities. Others may use it to spread information and share facts. But it seems so many use the platform to spread lies, rumors, hate, and racism. What I see there on a daily basis disgusts me. My friends list consists of people I actually know in real life, cancer families, and bereaved parents. Most of what I am referring to is not posted by people on my friends list. It’s comments on articles or other posts, or posts and comments in groups I’m in. But I have blocked friends for things they have posted and will continue to do so. Not for things that are a simple difference of opinion, but things that are clearly hateful and racist. It’s not about politics, it’s about human rights and basic decency. Anyway, I did not intend to write about Facebook, so let’s get to the point of my post.

I mentioned that I started my Facebook post because I was tired and fed up. I know many of us are, for various reasons. What prompted me to start that post was just one more comment about how mandating masks violates rights. Blah, blah, blah, whine, whine, whine, my rights, my rights, my rights. Requiring a mask in a store is no different than requiring shirts and shoes. You don’t like it, don’t go. Sure there may be some medical reasons why one cannot tolerate a mask, but I see so many, so many people say they can’t wear one and I highly doubt it’s that widespread. They are uncomfortable and hot but that doesn’t mean you can’t wear it for the short amount of time you are in a store or ordering food or whatever. If you truly cannot, this doesn’t apply. I certainly am not going to be the mask police because I don’t know someone’s reason for not wearing one, but I will certainly give you the side eye if you are say, not wearing a mask while walking through the gym even though it is the rules of the gym (you do not have to wear the mask once you begin exercising). If you can walk on a treadmill, you can wear the mask to get there. You know who I never seem to see complain about wearing masks? Children. I have seen children out at the stores, all wearing masks and wearing them correctly. I’m sure they pull them up or down at times, but mostly they seem to be keeping them on. Yet adults are throwing tantrums over this. Every time I put a mask on, every time, I am brought back to the oncology clinic when Ariella would have her port accessed. I had to mask up for that. This is what masks remind me of. Ariella getting jabbed with a needle so her toxic chemotherapy could be delivered. I see the needle and the room. I smell the smells. Wearing a mask physically brings me back there. Seeing masks everywhere I go brings me back to the ICU, when anyone coming into Ariella’s room had to wear a mask. It takes me back to that room, Ariella lying in the bed, connected to machines and the ventilator. I hate masks. They are a trigger for me and completely unavoidable. But I wear them. I wear them for the community. Many say those who are more susceptible should just stay home. But say they do? What about the people that shop for them or care for them? Those people do need to go out in the world and if they are exposed, they bring it to the people they are caring for. Masks work. But I know that I am not going to change anyone’s mind who disagrees, and that is not the point of this, so I will not say anything further, other than this. Even though I think anyone who can wear a mask, should, I do not agree with “mask shaming.”. As I mentioned, there are valid reasons why someone may not be wearing a mask and unless you know their reason, it’s not your place to enforce the rule. Just stay away from that person if they make you uncomfortable. Now if they are being an asshole about it, refusing to wear one just because “I can do what I want, I don’t have to wear a mask”, then handle that as you like.

I am tired that people complain so much about minor inconveniences when yet another family that we know had to say goodbye to their child because of cancer. America is a country full of selfish and entitled people who do not realize how good they have it. Does the pandemic suck? Yes! But most hate it because of the quarantine. What about the people that have died, or have lost loved ones? People like to quote statistics. They like to say it’s such a small number that die. But what happens when it’s you, or your child or loved one? Do you want to be treated as a statistic, or a person? People take comfort in statistics because they can think chances are low that it will happen to them. Well you know what is rare? Sarcoma. The chance is low that you will get sarcoma. Well that is little comfort to me. And if there was a way I could help prevent others from getting sarcoma, or any cancer for that matter, I would do it. There is a way to help prevent Covid, and that is a mask. Shit, back at the mask again. That wasn’t my intention here. It’s just such a minor thing when there are people out there with real issues. The constant complaining is wearing on me.

I am tired of the racist posts and memes I have seen on Facebook. If you find yourself unfriended or blocked, that is probably why.

I’m fed up with people who apparently seem to think that now that a year has passed, we are okay and there is no need to reach out anymore. It hurts. It hurts a lot when people disappear. I know people have their own lives and my loss is not first and foremost on their minds, but still. My circle has gotten significantly smaller. I do take comfort in those that are still there (hopefully you know who you are) because I know it hasn’t been easy. I still do not always respond to messages, I often do not want to get together, and I almost never will initiate any kind of plans, or even conversation. But I always appreciate the effort.

I’m tired of kids dying from cancer. I’m tired of the lack of attention and funding pediatric cancer gets. Imagine if there was the same attention and outrage for childhood cancer as there is for Covid-19. The difference is cancer isn’t contagious and statistics say childhood cancer is rare, so again, people think it won’t happen to them. But really, who the fuck cares if it’s rare?! Isn’t one child dying one child too many? Our children are worth more than that.

I’m tired of living. I’m tired of my empty life and quiet house. I’m tired of trying to figure out how to fill my days, especially now that I’m not working for the summer. I hated, HATED doing my job virtually, and I was so happy for the last day of school. But now I’m struggling with trying to find distraction, finding something to do to keep me from screaming in a rage. Trying to figure out how to just “be” is exhausting. Grieving is exhausting. I’m so tired.

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Isolation? Fear? Been There, Done That

The country is in a state of panic. Mass hysteria. And I feel nothing. Do I worry about loved ones? Sure. But am I at all worried about myself? Not the least bit. I’ve lived through this. The fear, the need for quarantine, the worry I could pass something, anything along to my immunocompromised child. The worst for me has happened. This doesn’t phase me one bit. Other than the fact I’m wondering if there will be anything left at Trader Joe’s tomorrow when we do our weekly shopping.

This is serious. Of course it is. But yet people seemed to have lost their perspective. They seem to be more upset about what they are missing, or what their child is missing, rather than why they are missing these things. I completely understand the disappointment. I understand children, high school seniors, college athletes, being devastated about missing experiences and events. What I don’t understand is the complaining about it from the adults. Pain and disappointment are a part of life. This is temporary. Instead of complaining about how awful it is (not that people are dying mind you, but that your plans were cancelled), be grateful that this too shall pass. Be disappointed. Be sad. But stop fucking complaining about it all over the place. There are much worse things, like people actually dying from COVID-19.

I have pretty much given up Facebook (on the personal side, I of course still keep Ariella’s page going). Yesterday I made the mistake of going on. I went on to check if the schools had done anything because it is often on Facebook before emails are sent to staff. And what I found fascinating was not the number of complaint posts (and there were many) but who seems to be panicking and complaining. The cancer families I follow, the ones who should be panicking the most, who should be upset about more quarantines and isolation, are the ones who seem to be taking it in stride. Because this is their lives. They live this daily, virus or not. What I saw from them is the same thing I am feeling. Anger. Anger that this has been declared a crisis leading to immediate funds for vaccine and treatment development. Not denying that this is a crisis. But so is childhood cancer. And yet it is not taken seriously. There is no outrage. There are very limited funds to develop treatments. If the response to childhood cancer was similar to the response to the coronavirus, maybe just maybe there would be better treatments rather than decades old toxic chemo. What’s the difference? The difference is that coronavirus reaches everyone. Childhood cancer affects children and is “rare”. Yet more kids have died from cancer. So I’m not worried or panicked but I am furious. I am furious that childhood cancer does not get the attention it deserves because it doesn’t affect as many people.

I am also outraged over the behavior of many. Cleaning out stores. Stealing equipment that health care providers and the immunocompromised people actually need on a daily basis, not just in light of the virus. Hoarding supplies. There are still a lot of unknowns but it seems to me that most of us will be okay after a little inconvenience. And that inconvenience is necessary to protect those that may not be okay if they contract the virus. Acting selfishly, worrying only about yourself, is disgusting in these times. I read somewhere that people were having trouble finding baby formula. That is scary. If people would be reasonable. Buy items in a reasonable manner rather than clear the shelves. Then everyone would be able to get what they need.

I say I’m not worried. I’m not. But I understand it. If Ariella was here, I would be scared for her health. So I understand worrying about loved ones. But I just don’t get this mass hysteria. That scares me much more than the virus.

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CureFest

One year ago at this time, we were a family of three attending CureFest, a powerful pediatric cancer awareness and advocacy event. One year ago Ariella was wearing gold beads signifying her fighter status . She said she couldn’t wait until next year when she would be able to wear the silver beads signifying survivor/no longer in treatment status. This year we were a family of two, wearing white beads signifying that we are bereaved parents.

One year ago we were watching touching dance performances, many in honor of or in memory of a cancer warrior. Ariella’s leg was still healing so she was not ready to perform but she had big plans to perform the next year; a group with her dance studio, a solo, and a duet with her friend Ava choreographed by Ava’s sister Emma (Not sure how that was going to go. Ariella was talented but Ava is leagues beyond, but I know Emma would have made something work. I am heartbroken that we never got to see this come to fruition). She was also supposed to speak. Instead, I spoke for Ariella. This year Ariella was on stage again, but not how any of us imagined. This is how the dance should have looked.

Instead it looked like this

The parts where Ariella was on dancing are now empty. There is no one there. She also would have dazzled everyone with a tap dance.

One year ago we started getting the word out for Ari’s Bears. We had a tent on the mall and gave out bears and information. Ariella was so proud to be there.

This year we had a table but we were missing our founder. The one who started it all. The reason Ari’s Bears is here. She was the one who wanted to get a table at CureFest. She was the one who wanted to expand Ari’s Bears. And she never got the chance to see it happen. This year my mom and aunt came to support us and Ariella was with us, but not in the way we wanted. Her picture on the angel wall just happened to be right across from our table so we got to see her all day long.

We did give out bears, to all the fighters, survivors, siblings, and bereaved parents. But Ariella should have been the one handing them out, not us.

One year ago we reunited with friends met the month before.

This year we were reunited at Ariella’s funeral when they got off a plane to go home and instead drove from NY to us, leaving their luggage behind. This year they are our family, not just friends. Ava spoke about the irony of cancer. You lose family and friends because of cancer. They aren’t there for you. But cancer connects people as well. Cancer brought Ava and Ariella together. And then stole Ariella from Ava. Instead of dancing together this year, Ava danced for Ariella.

One year ago Ariella met Tom and Lauren and signed up to be honored at mile 62 for their Bigfoot 200 Endurance Run just this August

This year Lauren and Tom crushed the run with Tom finishing for the first time. Instead of the mile being in honor of Ariella, it was in memory of.

One year ago Ariella was honoring children who have died from cancer at the candlelight vigil and she was using her voice to advocate for pediatric cancer awareness and research funds.

This year we said her name at the vigil. And we had to be her voice and the voice for so many others. Way too many others.

One year ago Ariella was standing on stage with the other fighters and survivors.

This year David and I stood on stage as bereaved parents.

One year ago Ariella’s picture was on the tribute wall as a survivor/fighter.

This year she was on the tribute wall for the angels.

One year ago, though Ariella was in treatment, we had so much hope and optimism for the future. One year later we are shattered, broken, feeling hopeless, empty and lost. So much can change in a year.

I was not looking forward to CureFest this year. I am so tired of it all. Of cancer and stats and death. CureFest is a time of hope and optimism and I am feeling anything but hopeful and optimistic. At CureFest there is so much positive to be found. Cancer fighters and survivors everywhere, overcoming the odds. Young advocates leading the charge to spread awareness. My child had a voice (a very, very, loud voice) but she is no longer here to use it. It crushes me to be around all these kids. I am happy for those that survive. But I am also jealous. Why not my kid? Why was she one who didn’t make it? She deserved to live as much as anyone else. All of the kids deserve to live. None of them deserve to have cancer whether they survive or not. And it devastates me to know that this time next year there will be more families attending like us, minus one family member.

Here’s the thing, though. Before we were thrust into the unfathomable, childhood cancer did not cross my mind. No one I knew had been touched. I was blissfully unaware. And this is not okay. It is hard to watch. No one wants to think it will be their child. It doesn’t even occur to most people that childhood cancer is something to worry about possibly happening. Even when Ariella lost an alarming amount of weight, I did not think cancer. Especially when blood work came back fine. There is more to childhood cancer than Leukemia but they are “rare”. People aren’t made aware, doctors don’t recognize symptoms and each day a busload of kids gets diagnosed. People look away. It doesn’t escape me that only a handful of my Facebook friends and followers actually share my cancer posts. The people that see them are usually the ones that are already aware. It’s preaching to the choir. And this is a problem. Because posts aren’t reaching the people who need to see them. Because until the public is outraged and politicians are made to listen nothing will change. We had no idea until we were in the thick of it that September is gold for childhood cancer. Everyone is well aware of pink in October. When will childhood cancers get the same recognition? Until they do the research dollars will not be there and children will continue to die.

Those who don’t share, think long and hard about why you don’t. Isn’t this important? What if it’s your child, or grandchild, or niece or nephew? Don’t you want the research? Don’t you want a cure? You may think your posts may not make a difference. But sharing on social media can be exponential. The more it’s shared the more people are aware and the more politicians will have to take notice. And maybe it will help someone get diagnosed more quickly as well. It is too late for my kid but I feel a responsibility to continue the awareness. Right now it feels like a burden. The last thing I want to do right now is think about cancer, actively talk about it, see all the posts. But how can I ask others to spread awareness if I don’t. Ariella’s death, all these deaths should not be in vain and yet it continues to happen. Every. Single. Day.

I also had to go to CureFest for Ariella. Her legacy is Ari’s Bears. Her mission was to expand Ari’s Bears to reach as many kids as possible. The way to do this is by being present, showing up, getting our name out there. As hard as it is, this is what she would want. And knowing Ariella, if I didn’t attend, if I didn’t speak, if I didn’t give out bears, she would find a way to make me pay.

In the end, I am glad I went. Many, many people approached our table and told us they remembered Ariella from last year. One little girl wanted to give her old doll clothes to “the girl who gave her the bear” to dress more bears. Many of the children/teens mentioned the bear they got from Ariella, whether it was at CureFest, at the hospital, or in the mail. I got to see first hand the impact Ariella had on other kids fighting cancer. I was reassured that she truly will never be forgotten, that her legacy will live on. We reunited with many friends made along the way and met in person people we only knew online but unfortunately know all too well. We got to hear stories of other amazing children taken way too soon and got to share in the victories of children still in the fight, whether they are years in remission or still in treatment.

I mentioned when I spoke that cancer does not make a child strong. They don’t all of a sudden have superhero strength to tolerate toxic treatments and a life threatening illness. They tolerate it because they have no other choice. But these kids, and siblings, are indeed strong. They are strong, not because they have cancer, but because of how they choose to live in spite of having cancer. These kids, they suffer, and they cry, and just want to be normal kids. But they also smile, and they play, and they laugh. They participate in their activities when they can, they go to school when they can, they participate in life as much as they can. They are sad when they have to miss out but they live life to the fullest at every opportunity. They don’t dwell on cancer and they are hopeful and they advocate and they want to help others. This is strength. Those are all choices. Cancer is not a choice. Treatment is not a choice. “Living” in spite of that, is a choice. And every child I have met with cancer lives the same way.

I take my inspiration from these kids, Ariella included. I blogged before about not wanting to be called strong just because I get through each day without my daughter. That isn’t strength. That is survival. But this weekend was the first time I have actually felt strong(er than I have which wasn’t strong at all) since Ariella died. I chose to go to CureFest. I chose to get on stage and speak for Ariella. And I chose to share her story and give bears to all the kids who still get to live. I chose to be around countless triggers because Ariella would have done the same. She did the same. She gave bears to other kids even though she had cancer. She went to the dance studio and competitions even though she couldn’t dance. She went to CureFest as a fighter, wishing she was one of the many survivors. She stood up in front of people and took off her wig and told her story. She is my inspiration and she is why I ultimately made the decision to attend.

You want to have your heart broken, go to CureFest or any other pediatric cancer activity and event. And if you want your heart uplifted, to be filled with promise and hope, go to CureFest or any other pediatric cancer activity or event.