Aidan and I went to speak to a group of pediatric nurses at Yale in November because we’re all that. This is one of my favorite gigs. Families and medical staff are partners in our children’s health care. It’s important to acknowledge the information gap and work together. I’m not a trained medical professional so I do need the expertise of Aidan’s doctors and nurses. I do, however, know Aidan quite well and am the only constant at his appointments. I have all of the pieces of the puzzle for those moments when the doctors’ notes are wrong (and sometimes they are) or the chart doesn’t get sent to the next specialist (because sometimes it doesn’t). I’m a walking library of my son.
I hold the big picture while medical professionals can hold some specifics about my son, but we need to share our information.
My visit to Yale this time turned into 2 hours of Q+A which was great. I could tell our story from many angles and talk for hours on end about Aidan and his progress and challenges. The students had great questions and were able to steer the conversation. I covered a lot of medical information about Epilepsy (it effects almost 3 million people in the United States), shared personal stories (yes it’s hard that my husband and I hardly date), and showed some pictures of Aidan to bring home my main point: Aidan is only one member of our family and his medical journey is only one part of his life.
Aidan actually had several seizures during our discussion. I have to think in a weird way it was an educational experience. I was able to point out the different aspects of what they were seeing: he sometimes gets very still before a seizure; his eyes get jiggly; his hands are very shaky at the end; his hips can be extended. Then there is the post-ictal phase. Though Aidan comes out of his seizures fairly well, they do make him tired.
Here is Aidan blue eyed and handsome at the beginning of class:
And here he is tuckered out, disheveled and blotchy after 5 seizures:
I believe these real life, out of clinic conversations and observations are important and I appreciate the nurses’ desire to hear our story. I know there are physical therapy students reading this blog whom we will visit soon and I’d like to welcome my readers from the Pediatric Nursing Journal.
So medical professionals, do you have any questions about what it’s like to live in Disability World? Ask away…