Friday, August 03, 2007


Because I'm short on sleep, patience, and imagination, I'm also short on words.

And because I'm short on words, there is only one word for this day:


Seriously there are other stories to many more. Stories about waking at 4:30 in the morning and stories about taking off from Tampa in a rain storm. Tales about the one bedroom at the Children's Inn that doesn't have an attached bathroom, and tales about the outbreak of bedbugs at the Inn. Chronicles about not being able to do the MRI until the results of the blood draw were posted, and chronicles of the conversation with the neurosugical fellow that included an odd reference about still being able to participate in the study because of the nasty brainstem tumor. There are many more stories to tell!

But those very intersting stories will have to wait.

Because instead of sharing the drudgery of our days, I'll follow my son's lead and be gracious in thoughts and grateful for results by sharing only one word:



diary of a genetic defect said...

Hey, hope everything is going well and your fundrasing efforts are worth every second. How can donate?

Mother hood is going well, just wanted to keep in touch.

scrappysue said...

I am the mom of a 22 y/o son who has been sick since 8 y/o. He has Idiopathic Intercranial Hypertension ( another disease not so well understood and where financial funding lacks in research areas.) My son has had almost 80 surgeries to head and spine for shunts and shunt revisions. Steven, I want you to know what an inspiration you are to myself and my son. I pray that all goes well for you and you get the funding you need for the research. I'm sure that you will, especially with such a positive outlook. Best wishes.


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