The ultimate horror for parents is to outlive their children. We are designed to release these dazzling spirits from our bodies and care for them as best we can until we disappear over the horizon of our lives. To break this design shatters the world.
When doctors told Stella and her parents of her diagnosis, they were carefully vague. Eric came home bewildered, sat on our bed, and googled ASPS on his phone. Mikah was playing in the bathtub, and I stood in the bathroom doorway watching him while Drew sat on our bed, too, looking at the phone’s small screen. Grace was doing homework downstairs, so she didn’t hear or see Eric as he learned the danger his daughter faced.
No words can describe the explosion. Imagine a Himalayan mountain videoed over the span of a million years as it wears down to sand – then speed that video up so the dissolution occurs in a tenth of a second. Drew held onto his dad as sobs tore through him. Minutes passed. When Eric was able to stand and go upstairs to use his computer to learn more, Drew stayed on the bed, as stricken as he was silent. Only after I had Mikah dried and dressed did Drew collapse into me, making sounds I cannot even name, only hear again and again and again.
So how do we move on from this moment? Seventy-seven days have passed since that late evening, yet every second of it remains as fresh as fruit just sliced, still wet and glistening. Grief, fear, and bewilderment pour out of us without stopping or slowing. Yet, we do keep moving. The kids are attending school. I am teaching. Stella’s parents are driving her to treatments in Burlington. The core force that maintains momentum for us is, of course, Stella: we hope her protocol of chemo, radiation and surgery will halt her cancer’s growth and expect that clinical trials will provide her the cure she needs in the future. Her dad spends most nights on the top floor of our home hunched in front of his monitors, researching the most sustainable treatments, collating relevant studies, trials and journal articles.
Hope can’t cure grief, though. Too much light has left this land. The day after learning of her sister’s cancer, Grace pulled on a purple sweater hand-me-down of Stella’s and wore it for two weeks straight, even in bed at night. Drew has grown excruciatingly grim. He watches his dad with razor-sharp focus, jumping to help at anything, filling wood bins, stacking lumber, and – with almost divine intuition – offering to play cards when Eric seems most at loss. I remember as we painted eggs for Easter, Drew used a white crayon to write on his: “Ward Away Evil” then dipped the egg into blue dye, the color for protection.
Is there any way to taste joy, even when thrown into horror? For answers, I have looked to people in the most terrifying of situations: survivors of Holocaust concentration camps, American veterans, Syrian refugees. They offer stories that parallel the wisdom of Buddhists: let the lens of your attention shift, and you will feel light. Last weekend, Eric built fences around a neglected field to pasture a friend’s three horses, and each day I lean into the one I fancy, a gray roan, my arms around his chest, my nose against his slim neck. That heady scent of horse, such a sweet mix of earth and sky, fills me. Drew goes to Mikah in a similar way. Far too often, Drew comes home from school looking gray, almost ghostly, until his little brother leaps into his arms begging to wrestle. Blood flushes back into Drew’s face as the two boys tackle each other on our king-sized bed, giggling the way kids are meant to. Grace has had a harder time laughing, and her new gravity hurts deeply to witness, but working – whether on homework, soccer, the school play, or graphics with her new ipad – seems to offer her relief. I try to rub away the tightness in her back and shoulders as she snuggles next to me at night.
There is no way to diminish the pain. And we wouldn’t want to. In opening to it fully, experiencing the sensations of it and the emotional tidal waves of it, we are growing as we need to, so we can help Stella in every way possible. A knife has sliced through us all, yet rather than blood pouring forth, I see stars, dozens of them, rising from these new openings in our bodies, climbing into the sky, promising that wishes come true.