You would think February through May would be the toughest time of year for me and it certainly isn’t an easy or fun time for me, but fall is harder. Fall was my favorite time of year. Fall was Ariella’s favorite time of year. Fall was the time for family. Apple picking, pumpkin picking, hayrides. Ariella’s birthday. My father’s birthday. The crisp air, the bright colors, the new beginnings. New school year, fresh starts, cool evenings, and the beginning of boots and sweater weather. Fall was comforting, like a warm blanket warding off the chill. Now it just mocks me, taunts me with what I no longer have. The quiet has replaced the laughter, the daily grind of just trying to survive has replaced the pranks, avoiding trick-or-treaters has replaced excited costume preparations, and while I still enjoy the fall weather and colors I miss everything else we used to do so much that it still physically hurts when I think about it. Fall is also when something was first wrong with Ariella but none of us had any idea how serious it would be. At that time Ariella had begun losing weight. We were working with the pediatrician to determine the cause but all her labs were coming back normal. Ariella had also been complaining of pain in her leg but it was off and on and an x-ray at the time showed nothing serious. She was given crutches but used them sporadically. She had them the last time we went apple picking, sometimes using them and sometimes just holding them and walking without any problems whatsoever. What if? What if we took that injury more seriously? What if we went for more follow-ups? What if we told her pediatrician about the leg pain? Would he have connected that to the weight loss and explored further? What if she started treatment sooner? What if we started treatment then instead of months later and maybe the tiny cancer cells wouldn’t have broken off and removing the tumor would have removed all the cancer? What if, what if, what if? Fall brings me back to all the things we could have done differently. I know this is illogical. I know hindsight is 20/20 and maybe none of that would have made any difference. But we will never know.
Last weekend we again went to CureFest, a childhood cancer rally. The first year we went was with Ariella, in 2018. She was in treatment for the second time and we were optimistic. You can’t lose hope. Hope is what carries you through. And CureFest for most is a time of hope and advocacy and seeing the possibilities. But for bereaved parents it’s different. The hope is gone. The only thing we wish for we can’t have. It’s important to advocate and make our voices heard so other children and families don’t have to go through it. Childhood cancer research is grossly underfunded and without all our voices it will continue to be so. But still. It’s still too late for our children and I would be lying if I said that I didn’t harbor jealousy, resentment, and bitterness. CureFest is very tough for me but I also plan to keep going. Anything we can do to provide even a little bit of comfort and joy to the children makes it worth it. And judging by the smiles that day and how busy we were, we were able to make many kids happy that evening. But even more valuable to me is getting to see other families we have met along the way. Especially the other bereaved parents. Because there is nothing like just being with others who understand.
I’m trying to keep busy and maybe even change the meaning of fall for me a bit. Trying to bring back some of the positive connotations so I don’t feel like I’m drowning. I’m winding down my training for the marathon which is good because my leg still isn’t feeling perfect. Nothing serious but not being able to give it as much time to rest has been a challenge. Fall is my favorite time to run so not being able to run as often as I would like is also difficult. But I am looking forward to the marathon and then exploring new opportunities, like becoming a run coach. I say if I ever were to change my job (which I’m not, I love what I do), I would go into something fitness related. Being a run coach would allow me that but also continue doing what I do. But I need to do something. Something meaningful, something with purpose, outside of my day job. I feel lost. I haven’t found my new identity, other than bereaved mother, and I want to be more than that. I just haven’t figured out how. Because no matter what I do, that person is in me, is me, even if those around me don’t realize it. I still find it to be such a strange dichotomy, suffering this terrible loss and being in significant pain every day, but also going about my normal life and even laughing and having fun. It shouldn’t make sense. And yet. Life goes on.
