Stevens Johnson Syndrome Archives

Another Reason We Travel: I like to move.

June 20, 2012

I don’t know if it is hormones, onion layers or simply human nature. There is no question that I feel more resolved and more peaceful today than I ever have. And now, even in those crazy moments, I know I can talk myself off ...Read More

Blindness

March 29, 2012

Last night I found myself talking on the phone. We had been trying to get ahold of each other for a few days and I was grateful she called. I know her, but not as well as I would like. She is the sister ...Read More

Stevens Johnson Syndrome Family Recovery: Tell Me How to Cry. Please.

February 14, 2012

It appears that I have lost the ability to cry. No. Really I have. Once in a while I can muster up some mist around my eyes. On occasion I can even convince a few tears to roll (albeit uncomfortably) down my face. And once ...Read More

Stevens-Johnson Syndrome: Thinking your child is going to die and what that does to your head

February 1, 2012

I put some sad music on. Nothing like Arvo Part’s Spiegel im Spiegel to do the trick. I am trying to find that space. I need to heal that space. Whenever I go to that space my words immediately become clunky, jumbled and paralyzed. ...Read More

Happy Birthday Kyle!

December 21, 2011

Happy Birthday Kyle! We love you! Today, on his birthday, I keep trying to write a letter to Kyle. I want it to be profound. I know he knows I love him and that I always have his back. I have held on so ...Read More

Yesterday was Grandpa’s Day and then I fell down the stairs

December 3, 2011

Yesterday before I went plummeting down the stairs I had what I thought was a beautiful post started about Darryl, Dave’s Dad. Darryl’s funeral and birthday were both a year ago yesterday (December 1). Happy Birthday Grandpa! I had lovely things to say and ...Read More