MSI Press Blog

  Doah indicated from a very early age that he had quite a capacity for embarrassing his parents. Come to think of it, at 47, he still exhibits that now highly honed talent. The first incident occurred when he was about three years old. He was just beginning to talk, and he was still so small from his early issues--CHARGE Syndrome, tracheotomy, prematurity--that I was holding him like an infant while the doctor, with a nurse standing next to him, explained to me what he would be doing during the visit (normal stuff).  Suddenly, Doah reached out and grabbed the shoulder of the nurse and the shoulder of the doctor and tried to push them together, saying, "Kiss! Kiss!"  Yeah, not so normal stuff. With many more incidents to come. Book Description: Raising God's Rainbow Makers: A Family Memoir of Grace, Grit, and Growing Up Different What happens when a military family welcomes four children—each with wildly different needs—into a world not always built to support them? In Ra...

When we moved to California, we had to find the right school for Doah. He had specific learning issues. He had certain behavioral issues, and he had certain physical issues. The automatic placement by a school system tends to be the course of least resistance, not always the best course for the child. Lizzie visited every classroom that might have been selected for Doah, once we learned that the planned one certainly did not meet our expectations. She found the ideal classroom and a very talented teacher, who happened to be the wife of the superintendent, but it was not on the normal bus route for our neighborhood. We met with the superintendent and a special education committee. Our point was that if they were going to have to send a bus to our house anyway, we were already in a non-route, special bus situation, so why could it not take Doah to the program that was most appropriate for him. There was considerable pushback because it was not the way they usually did things.  I took...

  Some people navigate social life with nuance, strategy, and finely tuned emotional radar. Doah is not one of those people. He has never had the cognitive scaffolding or emotional filters that help most of us sort out relationships, hierarchies, or the unwritten rules of “oughts” and “shoulds.” Instead, he moves through the world with a kind of joyful directness—simple, sincere, and utterly unencumbered by social categories. Which is how he greets his primary care physician. The moment we step into the hallway, Doah takes off at full speed, arms flung wide, shouting, “My doctor! My doctor!” before slamming into the poor man with a full‑body hug. His PCP—an introverted, elderly gentleman who looks like he might faint if someone so much as waves at him—stiffens, blushes, and then awkwardly pats Doah’s back. But he likes it. I can tell he likes Doah very much. School was no different. Doah never distinguished between the “in” crowd and the “others.” He didn’t recognize social cliques...

When the kids were little, we drove from Pittsburgh to Daytona Beach, Florida, to visit Donnie’s grandmother after Grandpa died. We spent some lovely days on the beach. Lizzie and Shane ran straight into the surf like they had been born with gills. Noelle, determined as always, figured out how to wade with her braces and crutches. (When we got home, we had to explain to the bracemaker how the ocean had “mysteriously” demolished them. He was not amused. Noelle was.) Doah, only a couple of years old, couldn’t run with the others. He still had his tracheotomy, so he and I sat in the sand building castles while Donnie supervised the older kids. It was one of the rare moments in those years when I felt relaxed — truly relaxed — because most of our time was spent in hospitals, clinics, or managing medical equipment at home. Sitting there with him, letting the sun warm us, I allowed myself to believe that everything was under control. And then the ocean reminded me that nothing is ever under ...