Last week, our family was lucky enough to be able to travel to California over Rett’s anniversary. The last two years, we’ve taken ourselves to warmer, sunnier, greener places—an attempt to create a tradition to ease the disconcerting days that lead up to the day he died. If you know trauma, you know it can be buried deep. And there are dates and events, songs and scents, that bring up the most painful time of your life like it is fresh and raw in your face. Although this winter in Maine has been mild, with plenty of days above freezing to frolic outdoors, it’s still a marathon to get through, especially since it’s always jaded by grief for us.
The winter Rett was sick with cancer, 2014-15, was the snowiest I can remember. Storm after storm, it was nonstop inches and frozen tundra. We watched from the hospital windows, wondering when this “storm” of our life would recede. Each time the doctors asked, “Would you like to take him home and enjoy his last days or continue with treatment?” we just pushed forward with the latter holding hope that a spring would have to come eventually. It’s what all parents would do and we have no regrets for believing that we could save him.
It wasn’t until we were turned away by both Boston Children’s and St. Jude’s—two of the very best—that we knew it was time to bring Rett home. And after he was held and kissed by every grandparent and aunt and uncle, three days after a heroic Med-flight home from Memphis, during a glorious watercolor sunset, Rett let go of this life for something spiritually superior, something we can only begin to understand as humans on Earth.
Life without Rett is hard, as anyone with a heart would expect. Each year winter comes around and the waves of emotion of these four formidable months from November to February pummel us with grief. Sadly, the holidays are riddled with painful memories and the dark days of January fill us with dread. But we push through, knowing that we’re needed by Rett’s sister, Evie, who deserves more than anything to have joyful, positive childhood experiences unencumbered by the loss of her brother.
When 2/22 finally arrives, the sense of being buried by cold and darkness starts to lift. The days are brighter, and a family trip is exactly what we need to reset our aching hearts. This year we visited with friends and then took off on our own down the central coast of California. The sadness was there, but the beauty and expansiveness of the landscape gave us space to breathe through it. The soft, green rolling hills dotted with cows and shrubs led to massive rocky cliffs with turquoise waters crashing below in a froth of intense feeling. Extreme winds blew in the day before, a sign of Rett’s natural power. And the sun kept shining for us between quick bursts of rain on the morning of his anniversary; and of course, we saw a rainbow as we drove back up the coast.
The enormity and openness of this place was the perfect container for our grief. We poured our sorrows out to make room for the beauty & peace all around us. Our work as a bereaved person is to replace grief with gratitude. And it’s not an easy practice, especially after witnessing a child die from cancer. Hope can be lost entirely, as a black cloud continues to follow you around like a shroud of grief. We wanted more than anything for Rett’s life to be significant and not just a tragedy. Rett’s Roost is the torch that carries his light.
Back in Maine, the upcoming Behold the Cold polar plunge gives us something to look forward to. I love how our community rallies every time we ask for help. It is truly a remarkable thing that I will never take for granted. It’s this power of community that can only be found here, in Rett’s home, that is the foundation of what we do. With all of you, we’re able to bring together families navigating a path towards healing and re-creating joy in their lives. And that, right there, is what keeps us moving forward year after year without our baby boy.
If Rett and all the kids fighting cancer inspire you, you can donate to my dip in the ocean this Sunday by clicking the donate button below or here: https://secure.givelively.org/donate/rett-s-roost/behold-the-cold-2023-polar-plunge/deana-cavan