I recently wrote an article that The Mighty published about being angry. I wrote real feelings on how occasionally parents of typical children upset me. I said that I was angry that other parents don’t have the same worries as me. I said that I know it’s irrational to be angry, but at that moment I was. I was upset that the heartache I endure is not one that most other parents have to live with. I’m jealous that what worries me is not what most moms worry about. I worry about a cold ending up in a hospital stay, I worry about organs failing, I worry about hitting milestones…

I had the opportunity this week to talk with quite a few medical professionals at a genetics conference. One of the conversations was with a nurse from Minnesota Department of Health regarding alternate medicine and therapies. She was saying how she is always hesitant to suggest alternate therapies and occasionally has a hard time supporting them. As I listened to her and another colleague discuss the issue I finally interjected and said that sometimes all we have as parents is hope. I continued to tell her that by her telling me that “studies show there’s no evidence to support that XYZ helps with ABC” only discourages me and deflates me…

We had a follow up appointment with our son’s neurologist this morning. I asked to take a look at his repeat MRI so I could see the cerebellar atrophy myself. The atrophy is quite rapid and there is about 1/4 of his cerebellum left. He also has some cerebrum atrophy; there’ s a black halo near the top of his skull where there should be gray matter but there isn’t. I surprised myself on the drive home. I didn’t cry. Those scans change nothing. They don’t change the course of action. They don’t change who he is. We walked into that appointment the same way we walked out. I spent…