The Terror and the Love



The snow had just stopped falling in breakfast-cereal sized flakes in Plain, Washington and the Social Justice Fund board had just sat down to hash out the strategic plan for donor organizing in the coming years when Burke got the voicemail.  His little boy, Lucas, born with myotubular myopathy, was in an ambulance, having stopped breathing in the presence of his respite care nurse.  Burke reached out to me amid the crowd and we went into a darkened bedroom of the lodge and I tried to say reassuring things about focusing on his love instead of his fear but they were just words to prop up the air so it could be inhaled.  It occurs to me now that Burke and I crouched in that room and breathed—him nearly hyperventilating, me with the luxury to put mindfulness to it—as if to make up for his son’s lack of oxygen in the halogen-washed rectangle of a jolting ambulance two hundred miles west.




Fearing the loss of cell reception, Burke decided to linger and wait for more news before we split so we stood outside under the gunmetal sky and smoked cigarettes and said things about the terror of parenthood. I said that being a parent is like walking around with your heart outside your body, but you have to keep walking, which is something someone wise once said to me.  Burke said that he and his wife had known they had to keep living their lives despite their son’s condition, that if they didn’t, they weren’t being true to him. We share the terror.  But the odd or graceful or remarkable fact is that while my son is perfectly healthy—strangely healthy, in fact, for a toddler—Burke’s son was born with muscles that didn’t work and his parents sprang into battle for his survival in hour one and have been fighting ever since.  And yet Burke might carry less terror in his chest than I do.  More than once I’ve gotten the sense that his terror is something that he carries like a briefcase while mine is something I wear like a hair shirt.  If I were faced with the task of fathering that Burke faces everyday, I doubt I would be a functional human being, much less an active, progressive, generous member of the Social Justice Fund board.  When a lymph node swelled to the size of a jawbreaker on my son’s neck for a few weeks, I fell victim to panic attacks despite the assurances of doctors, parents and common sense that it would add up to nothing at all.  Perhaps we all receive precisely what we can handle in this life—as people of faith might suggest.  Or perhaps Burke has just done spiritual work on fast forward.  At any rate, though I happily agreed to drive him back to the city, I felt even shakier than he appeared as we hit the blue high ways.




Phone reception came and went many times in the first few miles, the phone calls breaking before any sense could be made of what was happening in the ER that we hurtled toward.  On that black forest-choked highway under freezing rain, I strangled the steering wheel to steady my hands against the fear that right there, in my shotgun seat, this young man would get the news that his beloved son was gone.  I tried to imagine what I would do: pull onto the shoulder?  Speed up?  Say nothing, breathe deeply, keep driving?  Should I let him go if he told me to stop and then threw himself from my truck at a run?  Should I chase him?  What would I want him to do for me?




Fate was kind tonight and Lucas stabilized when he arrived at Children’s Hospital.  And by the time we were halfway back, Burke and I were having philosophical conversations about family relationships and justice.  By the time we strode the hallways of the pediatric ICU Burke’s urgency was more to simply hug his son than to reach him in time…




I was supposed to be at a board meeting all weekend.  I am so lucky that instead I was allowed to drive like a bat out of hell home in time to hug my own boy and put him to bed, safe and warm.  And I am so lucky to have the grace and courage of people like Burke and his partner Krista—and Lucas, too—to humble me and teach me.

You can read about the joys and struggles of Lucas and his parents here:





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