My friend Caitlyn has a daughter with disabilities, and no doctor has been able to figure out what's causing them. Caitlyn recently posted about another parent in a similar situation, a geneticist named Hugh Rienhoff who copes with the frustration of unanswered questions in a unique way: he's spent years combing through his daughter's DNA sequence one nucleotide at a time, looking for variants that might be responsible for her condition.
I followed Caitlyn's link to a recent Wired article on Rienhoff. It notes that many of his colleagues and friends call the project a fool's errand, and he himself admits that there is little chance he will ever find the offending gene(s), let alone be able to use that information to help his daughter. However, he says that's not really that point. He’s sifting through that huge mountain of data because it feels better to do something potentially helpful than to sit on the sidelines helplessly wondering and worrying. The author notes that “to Rienhoff, being the father who never relents is itself a noble goal. ‘In the end,’ he says, ‘this is simply about the extra ways a daddy can love his little girl.’”
While I've never faced any challenge as grave as Caitlyn's or Rienhoff's, the latter's quest really resonated with me. The most staggering problems of my life have been the ones I had no clue how to solve. It's easy to despair when you feel powerless. On the other hand, once I hit upon something--anything--I could do to improve my situation, hope rekindled. Taking action, even in a small way, lifted my spirits and made me feel like I was steering my ship, not being keelhauled under it. I'm sure that effect is compounded when the trial involves your children.