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.

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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.