Wednesday, November 21, 2012


It is easy to find things to be angry about, things to make me feel like God is not paying attention.  A glance through the newspaper shows so many stories of sadness and horror both close to home and worldwide.  I look at the photos of Clay that hang in my study and I can not bear seeing what he has been asked to bear.  But then we have moments like this, and I am thrown back into appreciation of all that we do have -- that we still have each other at all.

We had an early morning appointment today at Children's Hospital to go over Clay's blood work and do his weekly check in.  This is all standard by now (even the 30 minute wait in the waiting room no matter what time we arrive) and Clay and I joked about how fast the phlebotomist drew his blood ("Mom, he must have had A LOT of coffee this morning he was moving so fast!").  Then, two hours later, a second appointment with Physical Rehab to discuss doing electric stimulation to his face to help the palsy that is Clay's latest symptom.  After this, we got a snack in the atrium and made our way back to the garage, back to the car, back towards home.  Soon after pulling out of the garage, we heard a siren. 

"Mom, what is that, an ambulance?"
"Mom, which way is it going? To the hospital or away?"
"Sounds like to."
Long Pause.  "Mom, that is so sad. What do you think happened?"
"I don't know Clay, but at least they will be in good hands at the hospital."
"Mom, do you remember when I went blind, Dad was my ambulance."
Long Pause. "I remember."

A few hours later, back in the car, running to another appointment for Clay.  Grace is with us this time, and we are chatting about something else, something "normal."  Clay interrupts the conversation:
"Mom, you know what I am thinking about, right?"
"Well, no, not really Clay."
"Yes you do, it is from before, remember?"
"The ambulance?"
"Yeah Mom, I am so sad about that, I can't help it, I just am. I am so sad for that person."

I told him I had read a book where there was a prayer to say when ambulances go by.  Here it is:

 Siren Call
"God grant courage to those who suffer
Strength and peace to those who help."
(by Kate Braestrup ( Marriage and Other Acts of Charity)

Her simple prayers have become some of my favorites. This has become our dinner prayer, which Clay is happy to say most nights.

For the food before us,
And the family beside us,
And the love that surrounds us
We are truly grateful.

Happy Thanksgiving.


Thursday, November 8, 2012

9 Days In

Clay started the clinical trial last Wednesday, a day late due to hurricane Sandy.  My Mom joined us and we settled in for an 8 hour day of almost hourly blood draws (to see what the absorption rate of the medicine is).  The first month on this trial requires weekly examinations and one more long blood-draw day (next Tuesday). Then, if all goes ok, just monthly exams.  Today was one of the check-ins, and Clay is tolerating the medicine very well. He has a good appetite and is feeling pretty good overall.  Two pills twice a day -- easy compared to the other protocols Clay has endured, and at this point he is a "master pill swallower" as he tells everyone.

A huge thanks to so many people who who joined in on the golf fundraiser last week in Richmond!  Particular thanks to organizers Dave Ong, Brian Betz, and Mark Guarino.  This was an amazing show of support and will allow us to fund the project at Johns Hopkins.  More on that to come.