When you have a child with complex medical needs decisions are hard to make. At least they are if you’re the parent. Doctors tend to see things differently. Benjamin has brought so many specialists into our lives. I take these doctor/patient/parent relationships seriously. No matter how many visits over multiple years, I’m never quite sure we all truly understand each other.
Soon it will be the second anniversary of Benjamin’s feeding tube placement. Coming to terms with his need for this surgery was one of the hardest things I ever had to do, and I’m not alone. I have taken part in countless support group conversations about g-tube phobia, but when Benjamin’s surgeon asked me and my husband why we were so afraid, we were still unable to articulate our fears. In “The Surgeon’s Words Haunt Me,” over at Brain, Child Magazine, I tried to answer his question.