Yesterday I read a mom’s “worst day ever post” on Facebook. She received news that her 5 year old boy’s leukemia relapsed and he needed a bone marrow transplant as soon as possible. My heart broke for her. I empathized with her facing a Christmas, like the very first one, where nothing else mattered except a baby’s life.
In 1999, right before my son’s 2nd birthday, I had my “worst day ever.” Matthew was diagnosed with acute lymphoblastic leukemia. Around Christmas, he was in the toughest part of the chemotherapy treatment. If we were going to celebrate the holidays, it’d have to be in the slimmest and simplest way because our son had little to no immune system. We were extremely cautious about germs and wore medical masks years before everyone else. Regardless, pandemic or not, a bald toddler with a medical mask screams cancer which is very hard for people to “see.” It’s hard to watch commercials for St. Jude. If we drew any attention it oftentimes included sorrow and pity, which was comforting at times and sometimes strengthening. The kindness of strangers is awe inspiring.
It was the worst AND best Christmas.
We were present every moment and grateful for the few privileged and healthy family members who visited. I barely shopped, decorated, baked, cleaned or cooked. And honestly, I didn’t miss it.
Over the last several years a lot of families, especially ones that have members with deficient immune systems, have had to slim down and simplify their holidays. They stayed home with just a few guests to keep the risk of Covid down.
We were quite lucky that we were home and able to wake up to Santa’s treats and our cats and not in the hospital that year. However, we weren’t so lucky on Y2K when we wondered if the world would end at midnight. He was in for an infection, a high fever sent us straight to Children’s Hospital emergency room. The emergency room at CHLA was in an old part of the hospital on a busy city corner. As I sat in a dark, dingy room staring out the window, I secretly wished a car would smash into the window and take us all out together, quickly and painlessly of course. That didn’t happen and the world was fine. Down the hall from Matthew’ s hospital room, we toasted with Martinelli’s sparkling apple cider and noisemakers as we watched fireworks over Los Angeles from the window. After he got better, fighting off possible cardiac arrest, we got to meet our new niece born January 4th. The doctor advised the two could meet since their immune systems were similar. Watching my son snuggle with a newborn baby was a highlight of that holiday season.
Three long years later on January 13th, 2003, we celebrated his last day of chemotherapy (no bell). With every check up, we thank God for good results. I assured my son that every poke from then on out was an affirmation of his health and praised him for always being so brave.
I hope, pray and wish that the mother I heard about and hope to meet someday, will be able to look back 20 years to her worst AND best Christmas.
(written in 2021, on December 19, 2022, I finally met the inspiration to this story)
One Less Filter 