Review: I Wish I'd Had This Thirty Years Ago
Rating: 5 out of 5
Date: 08 3, 2012
Jessica Kenley is one POed lady.  She has paid the price of "kidowhood" = having two children die from Wpidrmolysis Bullosa, a horrible disurder where the slightest condition causes ever-growing blisters to form, and when the blisters break, the baby has a large area without skin.Worse than the disorder are the people who encourage you to be cheerful, and offer terrible advice, even including doctors and nurses. I observed the same thing thirty years ago when I had a wife with a rare and fatal illness.  Ms Kenley isn't exaggerating that even a little.I could recommend this book to everyone facing a rare and fatal illness, but it's even more important that it be read by those who deal with such people - doctorrs, nurse, ministers, family and friends...I don't know how that would ever happen, though. Maybe, there ought to be a pamphlet you could shove ar someone who is trying to be helpful, but is causing pain.But until we can eduate those dolts, this book is useful to caregivers, telling them that it's OK to be angry at God, angry about doctors who know less than the caregiver, angry at those who want you to live a life of denial.It's rarely a day passes that I don't think of my late first wife, and I'm terribly grateful for what she gave me.  It wasn't fair, though.  She was a generous soul, but she wasn't asked whether she wanted to enrich my life through her suffering, nor did anyone ask me.But Ms. Kenley shared Ethan and Kaylee with us, and for that, I say "Thank you!", and thank you for sharing your anger as well.  I thought there was something wrong with me that I was still angry.