The screensaver photo on my phone is from last Easter. I remember that Brent had blessedly begun regenerating skin after a horrific case of GVHD. He was weaning aggressively from his narcotics. We were filled with so much hope. Alex was home from Ann Arbor and we were all together after a long and stressful couple of months in hospital, most of it spent in the PICU. Lauren was healthy. Life was good.
This year is quieter. Brent is not here with us. Alex is in Australia. We finally found a moment of grace after the escalating cancer concerns of the past month. Doctors have determined that Lauren has shockingly relapsed with osteosarcoma, but at least she had some reassuring staging last week. While we have much work in front of us, sorting out a plan and likely returning to Houston for help with these uncharted waters, we are blessedly starting from a good position. There is no evidence of disease in Lauren's body at the moment. God willing, it will remain this way.
Lauren and I have been listening to the Hamilton soundtrack over the past couple of weeks. I think of Brent when we listen, because he and I had always hoped to see this show together, long before it was a smash hit. We schemed several times to attend with my dear friend Gabby, when Brent had appointments in NYC at Sloan Kettering. A mutant's calendar is hugely unpredictable, and this uncertainty is only compounded by trying to make social plans with another mutant. The planets never quite aligned. Gabby died last summer of metastatic breast cancer just as Brent relapsed with AML and Lauren was diagnosed with osteo. I miss her tremendously.
Hamilton is tenacious, hardworking, outspoken and ambitious. He yearns for glory in the revolution, even at the risk of martyrdom. There is a line in the musical where Washington sagely warns him, "Dying is easy, young man. Living is harder." The truth of this statement echoes and reverberates.
Brent and Gabby are both gone now, remarkable individuals who worked incredibly hard to remain among the living, to share their laughter and love. Living may have been harder for them, but I do know that it was worth it, for both.
Brent's living days were filled with so much activity-doctoring wounds, counting up nutrition, dosing medications and problem solving, day in and day out. But there was laughter, and there was so much love. It was hard work, his living, but it was hopeful. It was always worth it.
As helpless we were in witnessing Brent's death and as difficult as it was to plan his funeral with Dan, living these more recent and somewhat emptier days has been much harder in many ways. We trudge through, always trying to honor Brent's struggle and bring about positive change for others. It is something that we can do.
I attended a living "Stations of the Cross" service on Good Friday with Lauren, the first time that I have been to St Basil's since Brent's funeral. While we are not Catholic, I very much wanted to go to an Easter service there. I was impressed by how these teenagers, classmates of Lauren and Brent, selected popular secular music to reflect the various challenges that Christ faced on his last day. Lauren was touched by how her peers related the stations of the cross to everyday life, using their own experience and explaining it in their own words.
I wept, each time that Jesus fell. Lauren quietly passed me tissues, God bless her kind soul. The public display of Christ's struggle, his repeated failures, as well as the kindness and compassion offered by Simon and Veronica really spoke to me. The youth portrayed a very human struggle, and one that I could relate to, drawing any number of analogies.
Lauren drove us home afterward and I gazed at an enormous full moon out the window, thinking of Brent. This was the second blue moon of the year.
We decorated eggs when we returned home, a typical RamerNation creative endeavor. We made some eggs for Alex and Brent, which helped to heal my heart some.
Our family celebrated Easter yesterday, a time of rebirth and renewal. We rejoiced in our moments of beauty. Olivia shared Wordsworth's poem about daffodils. Lauren sang some songs and played her Uke. The world continued to turn, with Alex having adventures on the other side of it. Brent, even farther away, will remain with me for all of my days.