MSI Press Blog

  In the early 1980s, before CHARGE Syndrome had a name, before anyone knew that a cluster of anomalies belonged together, before “multidisciplinary clinic” was even a phrase, there was just a little boy with a tracheostomy and a mother who refused to accept the limits of geography. Doah was five. We were living in Pittsburgh, and the message was clear: there was nothing more to be done . His airway was too narrow, too fragile, too complicated. The local surgeons were skilled, but this was beyond their experience. No "implication" hung in the air; they said it out loud and multiple times (because I pushed back). There is no hope for Doah. In December 1980, when I asked about future expectations, the head of ENT put it bluntly, "His future is days, weeks if you are lucky." I didn’t accept it. So, I did what any mother with a medically complex child and no internet would do: I marched myself into the medical school library, found the Journal of Otorhinolaryngolog...

  There’s a reason I feel safe letting Doah shop at the market on his own. It’s not because he doesn’t have challenges. He does. It’s because we live in a town where the community quietly steps in to help raise him. San Ignatius is the kind of place where everyone knows everyone, and the abuelitas keep the teenagers in line with nothing more than a raised eyebrow and a well‑timed “Mijo, no.” They don’t hesitate to speak up, and the kids listen. Respectfully. Immediately. It’s a kind of social magic you don’t see in big cities anymore. And then there’s our priest. He is not just the Catholic priest for the Mission but also the town priest. Whether you g o to church or not, he’s everyone’s moral compass. If he sees someone misbehaving, he’ll correct them right there on the sidewalk or in the store, collar and all. People accept it because they know it comes from a place of care. But the heart of this story is the manager of our little market — the only one in town. He kn...

  Doah’s mind often worked in ways that startled me—sometimes funny, sometimes profound, always his own. His mental challenges meant he processed the world differently, but that difference often revealed truths I might have missed. 💰 The Nickels When Doah was five or six, nickels were his treasure. He loved to collect them, roll them up, and march proudly to the bank to exchange them for “real” money. Anyone giving him a gift—birthday, holiday, or otherwise—knew to tuck in a few nickels. And if he spotted one on the ground, it was pure delight. He prized those nickels as if they were gold. A few weeks later, we were on a plane—I can’t even remember now where we were returning from—sitting in the middle two seats of a bulkhead row. The man on the aisle beside Doah noticed how awkward the bulkhead could be: overhead bins opening and closing, trays swinging out of armrests, all the little inconveniences that make travel taxing for a child. He was kind and solicitous, helping us ...