“Toto, I’ve got a feeling we’re not in Kansas anymore.” 

Dorothy Gale, Wizard of Oz

The low profile wooden cart with a back rest that had been Natalie’s transportation around the hospital over the past month was full of her small clothes, a few stuffed animals and medical supplies.   There was so much excitement on the Clinical Research Floor because Natalie and I would finally be going home. I was young and naive, but full of faith which carried the burden of some of the fear. It was not the same for my husband.  While we had been at the hospital learning about GSD, he had been at work supporting our little family.

The day before our discharge Dr. Crigler bestowed some life saving advice that is written indelibly in my mind.   “Iris, this is a profoundly rare disease and you need to advocate for your daughter.  Most physicians do not know what you already know.  If ever you are in an emergency room and cannot get the help you need, please call me.”  I had no idea how important that advice would be six years hence.

I am racking my brain to remember nurses names and their part in our send off.  They were paramount in Natalie’s day to day medical care.  Why were they not memorable?  I wonder if it is like a child whose mother is with them day in and day out loving and caring for them at the expense of themselves at times, but when daddy comes home, there is no one more revered than he.  It could also be my own trust issues when it comes to women.  More than likely it is a combination of these and other questions that have not yet been considered.

Just before we left the floor Dr. Folkman instructed me about replacing the g-tube if it came out.  He backed it up which a sincere offer of his personal help if I needed it. He handed me a piece of paper with his home phone number on it and said, “please call me.  I will drive to your house and put it in myself.”   Both Drs Crigler and Folkman dispelled any preconceived notions about world famous physicians being unapproachable or unavailable to their patients.

Natalie’s daddy stuffed the compact car with the vestiges of our new life and drove us away from 300 Longwood Ave., along side Harvard Medical School bustling with future physicians and onto Huntington Ave.  We were going home, but I knew we would never live in “Kansas” again.

Lesson Learned: No one can change the diagnosis, but they can support you in it.