Soon we’ll be coming up on the fifth anniversary of the Worst Day of Our Lives. It was the day that my son’s hellish ordeal through a rare form of bone marrow failure began, and the day my mother unexpectedly died. It has become the day that all other bad days are measured against, a day which remains the undefeated champion of really horrible days – and a day that has revealed itself to be a tremendous gift.
The Day: Monday August 1, 2016
I woke up that morning already knowing it was going to be a very bad day. My son, who was just shy of turning three, had dark bruising and then developed petechiae, an ominous sign for sure. “I don’t have an appointment, but I think my son has leukemia,” I heard myself tell the receptionist after I walked in just as the office was opening. Stat bloodwork confirmed everyone’s suspicions that his blood counts were low but gave few clues otherwise – his cell lines had all crashed and he would have to be admitted to the hospital that afternoon to find out exactly why.
By that night, I drifted in and out of sleep while lying in the plastic hospital recliner in my son’s room. My little boy, who was just shy of his third birthday, was sleeping just beside me in a metal crib that looked suspiciously like a cage. I had squished my hand through the bars so he could touch my fingers and not be so frightened – he didn’t know I was holding onto his because I was utterly terrified.
Around midnight I woke up to the sound of my phone buzzing. It was my father, but by then the call had gone to voicemail, his breathless message telling me to call him because it was “very important.”
When I finally got ahold of him, he told me my mother was dead. The panic began to rise in my throat as I got the full story from him, so I left my husband and son sleeping in the room and ran to the family lounge at the end of the hall. The nurses were very kind and called in the chaplain, a middle-aged Protestant man who surely had seen it all, but he seemed as much at a loss as I was. I remember telling him I simply didn’t know what to do with my body at that moment. My son was hooked up to an IV in his crib just down the hall awaiting a bone marrow aspiration the next morning. And now my mother was dead. The kids’ nana. My mommy. Dead. I remember sitting there looking at my hands and not knowing what on Earth to do with them now, like these limbs were all so useless at a time like this.
Then I asked the nice Protestant man if there was a tabernacle in the chapel. He seemed puzzled and started to explain that he couldn’t open it for me.
“No, I just need to be with Jesus,” I explained to him. I don’t know where that came from except to say maybe it was a suggestion from my guardian angel or just a habit from being a lifelong Catholic. He took me downstairs to the tabernacle but the chaplain, sensing this all was now above his paygrade, called in the priest from the parish across the street.
When Father ambled in, I instantly recognized him as the old priest who I thought was a “dud” earlier in the day when he had visited our room. But he was exactly who I needed right then. He sat and talked to me for hours in the middle of the night, sharing about his own mother and his own loss. He heard my confession and invited me to Mass the next day in that chapel. It was beautiful and almost mystical to have God so present to me through this experience right when I needed Him most – and this was just the first of countless encounters that let me know I would not be walking this alone.
My husband had been waiting patiently for me outside the chapel doors all of that time and coaxed me back to the hospital room. He knew I’d need my strength for what we had to face the next day and in the coming days. We had no idea.
The Choice?
I can’t say things got much better after that day – at least not for a long while — but nothing was ever or has ever been as bad as the Worst Day of Our Lives. Still, it was that awful day when God showed his face to us.
He was there when the pediatrician, who also happened to be a pediatric oncologist earlier in his career, took my hands and told me, “No matter what, I promise he’s going to be fine.” He was there in the tabernacle and in the words of that kind priest. And part of me wonders if he wasn’t there to allow my mother to offer herself in place of my son that night.
She had told the story over the years about how she dreamt God gave her a choice between saving my brother, who was a toddler and hospitalized with severe croup at the time, or my unborn brother Stephen. She said she chose my brother with the croup and knew right then that Stephen would die. She delivered him stillborn at 42 weeks gestation and, as it would turn out, had me less than a year later – something that would not have happened had he lived.
I wonder if she was given a choice this time because as bad as things got, our son was always okay. The drug treatment that is only 40% effective — and usually doesn’t put the patient into full remission even when it does work — was all he needed to get better. We knew how blessed we were when other boys in treatment with him went to transplant, with one of them tragically dying from complications. But praise be to God, our son is now two years in complete remission and his blood cell lines are perfect – PERFECT – just like he’d never been ill.
He is almost 8 now and obsessed with baseball. He loves playing outside, building and imagining with his Legos. He adores his friends and family. He loves and protects his older sisters, even if they drive each other nuts some days.
But most astonishing is his faith in God for such a young boy. He prays the rosary (sometimes multiple rosaries) nearly every day. He reads his children’s Bible before bed, prays before meals and when he hears sirens, and even prays for his siblings after they fight. And he always makes sure he lets both of his parents know that he loves us, but not as much as he loves Jesus.
The Greatest Gift
I would never ask for this to happen to him or even wish it on my worst enemy, but I can’t say five years after the Worst Day of Our Lives that I’m not grateful for that experience and the blessings that flowed from it.
Had it not been for that trial, we would not have known how each member of our little family is a gift and that we can weather anything that comes our way as long as we stick together. We would not have known how many people – family, friends, our school and church communities, acquaintances, and even complete strangers – would care for our children and our family in our time of need.
We would not have the cherished memories that came from the generosity of others – the summer at Hershey Park, the trip to Give Kids the World and Disney, the many playdates and surprises that seemed never-ending through the worst of it.
But mostly, we received a gift that can only come from the peace and comfort of knowing we once survived the Worst Day of Our Lives – and seeing that God never abandoned us through it all.