Memories

This time of year, from March through May, I am flooded with memories. Memories that are in direct contradiction to each other, memories that have completely different emotions to them. Back in March 2017 Ariella had just begun her treatment. Our days were awful, our lives put on hold. We were scared and sad and feeling helpless. And we had so much hope. Less than a year and she would beat this thing. We could get through a year and then we would be back to normal. Her prognosis was good. In between hospital visits, when Ariella was in between treatments, those brief periods when she was feeling well, we could live our lives. We had a lot of fun. We even had fun times in the hospital. We had some terrible, terrible times in those early days, especially just trying to figure out this new life, adjusting to our new normal but I never felt completely defeated. Honestly I followed Ariella’s lead. I can’t say she never complained but she mostly had a great attitude. She never doubted she would get better and she cared more about comforting other children. And I would do anything to go back there. For better or worse those hospital rooms were our second home. We knew the doctors, nurses, child life staff and volunteers. We got to know other families. We decorated the rooms and brought comforts from home. Even when times were better, when Ariella finished her treatment, I missed those days. We had fun but there was also a sense of safety. While Ariella was there, we were fighting the cancer, keeping it at bay. Once we were out of those rooms we were doing nothing to stop it from coming back.

In March 2019 everything had changed. The promise of a cure from a bone marrow transplant quickly vanished when Ariella had to be admitted to the ICU, and then a week later was intubated. Of course we still held onto hope because without hope, you just can’t continue living. But I knew, I just knew if she was intubated she was not going to come off life support. I tried not to despair. We had some steps forward. But ultimately with each step forward there were larger steps backwards. As the weeks went on I lost more and more hope and began to fear more and more that we would lose her. Days and nights were spent staring at her vitals, listening to the beeps. We were terrified and exhausted and completely helpless. Ariella would have a great day here or there which inevitably would be followed by another setback. There was nothing fun about those days, just constant vigilance. I do not look back at those days with any sort of fondness. Even when Ariella’s room was overflowing her last day, visitors spilling out into the hallway, waiting to say their goodbyes. I’m glad people got to say their goodbyes. But following those moments I have to remember the machine being turned down, step-by-step until it was no longer keeping her alive, hearing Ariella take her last breaths, and feeling her leave us.

With the calendar having turned over to May I’m not filled with the sense of renewal that the promise of spring and warmer weather often brings, but instead filled with dread about facing the anniversary of the day Ariella died. Remembering those awful days leading us to making that impossible decision. Leaving the hospital without our girl after spending over 2 1/2 months there just hoping we would be leaving as a family, only coming back for check-ups. We went into the hospital on February 19, 2019, one week before her transplant, filled with hope and excitement, ready to celebrate her re-birthday. We left the hospital May 9, 2019 as a broken family of two with a hole that can never be filled.