India just called me from her first day of school to see if our house was in danger from the fire she could see on her way to choir class. I stepped outside to check....

This is the view of the mountainside from our front yard. Thankfully the wind is running the flames up the mountain instead of toward the houses.

When I came in, Carl had called from southern Utah County to check on us, too.

I think the boys have been left in the care of India and her friends a bit too much lately!


















Happily, they were able to go with Kevin on the Father/Son Campout over the weekend for some 'man stuff'.

I am more than ready to leave NIH. As interesting and impressive as everything is here, it is surreal in its isolation. It has become tedious to ride the elevators and walk the hallways to and from the 7 SW Unit, the cafeterias, and the family lodge. I think my mother may have had the idea that she and I would be doing things outside the NIH Campus more than we have done. Some of the time we were asked to stay close because of the risk of the procedures. As the week wore on, I think we instinctively stayed closer to Dad to try to divert him from the tedium.

This morning the research team wrapped up the testing and we were 'debriefed' by Dr. Goldstein. He published a book in 2002 that he used to frame his findings. Mom and I read most of it yesterday and were amazed to find such a comprehensive yet concise description of my Dad's life for over a decade now. It was bizarre to see in print so much that they have discovered themselves through their own research and experience along with details of the actual biological and medical explanations of it all. Missing, however, is the reason it all occurs-not even a scientist of Dr. Goldstein's caliber has any idea.

His comments today centered around confirming the extremely rare diagnosis of Pure Autonomic Failure. He seemed grateful to have been able to study Dad and interested in having him back at some point to follow his case as well as to include him in medication trials. Dad said he might be willing to come again, but not to ask him about it next week. He and my Mom are both exhausted, overwhelmed, and missing their dog.

All week we have met staff and patients from all over the country and the world. Dad's nurses have been highly skilled and colorful. One was a man from Iran whose father was assassinated during the overthrow of the Shaw. He began his medical career in a prison camp during the Iran/Iraq war. Another was from Sierra Leone, another from Uzbekistan, and on and on. The patient next door with the same diagnosis as Dad is from Italy. I have been very stimulated by the people we have met and the professionals we have admired in their work. I have also been touched by the people we have met at the lodge and on the unit who are here searching for ways to help their sick loved ones and by those who are here in treatment alone.

Mom and I spent the day at the National Gallery of Art.

The Martin Puryear sculpture was mind-expanding and thoroughly enjoyable. The pieces are all huge- filling up entire rooms and reaching toward the ceiling, and all are really moving. I think this is the first time I have really responded to modern sculpture.

We also toured the Afghanistan, Hidden Treasures from the National Museum, Kabul exhibit. Unbelievable. The exhibit consisted of artifacts hidden by museum curators to protect them from pillaging and destruction during the violence of the last few decades. It was a lot to absorb: the history of the locations along the 'Silk Road', the intersections of the many different cultures that influenced the area, the chronology of it all. It was not hard at all, however, to immerse myself in the beauty of the arifacts, especially the jewelry and decorative items. I even chose the 'Silk Road' lunch special- hummus, pita, stuffed grape leaves, and roasted red peppers.

My mother and I were both surprised to see heart-shaped elements in the Afghan jewelry from around the first centuries before and after Christ's birth. We read that the shape was used from even more ancient times than that and derived from the shape of a native plant leaf that people associated with the human heart.

Oh, and on on our way to and from these exhibits, we happened to see any number of extremely famous paintings by artists such as Monet, Pissarro, Renoir, Seurat, Toulouse-Lautrec, Degas, Cezanne, Gauguin, Manet, etc., etc. It seemed wrong not to stop and look, but weird not to be able to give every amazing thing we saw a full measure of our attention.

Dad spent the day in the PET scanner and MRI machine. He sincerely encouraged us to go out for the day, but I know it weighs heavily on my Mother that he cannot experience things with her. After a life of enjoying the world together, they have had to make a lot of changes. The thing that has not changed is their love and concern for one another- an example to all of us.

Greetings from my Dad's hospital room at the National Institutes of Health in Bethesda, MD. I am here for the week while the brainy Dr Goldstein studies the sorry, yet fascinating state of my father's autonomic nervous system. My Mother and I are staying in the family lodge here- about the equivalent of a 4 star hotel. My Dad's room is all tricked out with bedside Internet, room service, and several very kind nurses just down the hall. He will spend the week having constant tests, scans, blood work, etc. Chances are that nothing here will materially change his condition or quality of life, but the results may further the scientific understanding of his condition.
When I am with my parents, I am always amazed at the grace and patience they display as they manage the challenges of their life. Their love, affection and caring for each other and their ability to reach out to other people are inspiring to me.

In the last week, the air at night smells different and has been a little cooler. I think I have lived here long enough to sense the change of season coming on. Last night was actually cool enough to open the house.
As I lay in bed, I was pulled back from the brink of sleep by an unfamiliar noise coming through the open window. It took me a groggy moment to identify the sound. But then, I raced downstairs and outside, to where a fairly large deer stood eating my tomato plants. The confrontation gave me an adrenalin rush that kept me awake for a while.
This whole experience is bringing out a primal instinct in Kevin. He reported laying awake plotting ways to violently kill the deer-possibly in hand to hoof combat.
I fly out tomorrow to meet my parents at the NIH. I am worried about leaving Kevin unsupervised.

India called me last night as she was going to bed at EFY. She has really connected with the experience and has been giving me daily updates about the fun speakers and amazing classes she has attended. She loves being in the dorm and is looking forward to college life. Last night, she talked to me for over 30 min., reviewing the notes she took in class and telling me some of the things she has learned and the insights she is gaining. I am so glad she is having a spiritual experience and hope she can bring the energy of it home with her and take it into the coming school year.

I dreamed in the night that when I went out in the morning to water the garden, the deer had eaten the leaves of the rhubarb. I was so pleased that they were likely suffering an agonizing poisoning death and would no longer be available to eat my fruit and veg.
Sadly, I awoke to realize it was only a dream and that they had actually stripped the front half of an apple tree and started in on the pumpkin blossoms.

Check out pics from the Breaking Dawn midnight release party at Barnes & Noble! The theme was a formal wedding reception. Mary Seamons is here visiting India, and Coral resurrected one of her stalkers to escort her- we also saw many, many of our friends and acquaintances at the party. Thanks to Coral who went at 4:30am to get our wristband, we were able to escape the madness with our books shortly after midnight with no one, and more importantly, no dresses trampled by the HUGE, crushing crowd.