Tuesday, August 05, 2008

Wishes from the Trenches

Steven and I are heading north tomorrow, up to the House of Hope in the Land of Mercy. He's scheduled for blood draw and MRI on Thursday, and we'll follow with the clinic visit on Friday morning.

I'm fairly confident that all is stable, yet the odd headache and irregular cases of hiccups that keep popping up this summer leave me a little rattled. I'm not feeling quite as tranquil as I was on the last two visits.

These August visits also leave me exhausted, and I'm not exactly sure why.
It could be the memories and emotions of our first trip to the NIH, or it could be the busyness that accompanies the ending of summer. In reality, however, I believe that the exhaustion is the result of flying north, catching a shuttle, settling into a room, drawing blood and imaging a brain and scan, visiting a clinic, catching a shuttle and flying home all in twenty-four hours.

This year, however, we're flying up on Wednesday!

While the thought of an extra 24 hours leaves me smiling with sheer joy, it also means an extra twenty four hours of pure and unadulterated joy for the grandparents...in the form of David


...and Mary.

Summer Fun!


Yet as I try to pack a bag and check for flight delays, I'm distracted. Distracted by wishes.

Three wishes
one day early.

1. I wish for a cure for VHL.

Nothing less than a pure and simple cure to give my sweet boy a chance for a long and healthy life.
Nothing less.


2. I wish for peace and grace during this trip.

We've been hit with some pretty shocking news over the past three years. I believe that we've handled these grisly reports with a certain amount of peace and grace.

I hope that we continue to do so, both in light of stable and in the face of worse.

Forever.

3. I wish for peace and grace at the grandparents' homes.

Goodness know that David and Mary also can create some pretty grisly situations of their own.

5 comments:

Flohbock said...

what a day! :o)

lorig said...

I have never heard of VHL before. It sounds like it is taking its toll on your family but that it has not beaten you. I wish you well on this trip and that there will be a cure for this disease.

ispeakbeanish said...

I'll be praying that you have a smooth trip!

Great photo!

Kelsey said...

I am with you praying for a cure!

jainhollie said...

I just wanted to stop by and say thanks for visiting my blog. And then I find out about your son and all the things you're going through, and it makes the comment you left me even more precious. I'll be praying for you and your son, and your trip.

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