Tuesday, July 27, 2010

File this Under ...


This summer has been tough for my sweet son. In ways that I expected but perhaps he has never digested, the disease continues to work it's way through his body as he ages.

While my sweet son handled the news of the epididymal cystadenomas with his usual grace, the realization that his retinas are no longer disease free hit him with a punch.

File this under...


As we absorbed the news over brunch, Steven broached the subject of this blog and my lack of recent writing. I reminded him that I'm often uncomfortable writing about his life as he finds his wings, and that I prefer to err on the side of being cautious.

But that difficult mornign he asked me to write.

A book.

About this journey.

I told him that I wouldn't be able to tether my stories to decency and carefulness if the memories were to be true.

He agreed.

I told Steven that I would have to write about often wishing he had been diagnosed with a different disease.

He agreed.

I told Steven that I wouldn't be able to tell this story without describing how now I'm not afraid of anything because I'm fearful of everything.

He agreed.

I told Steven that I would probably lose some friends when I described that comparing Steven's illness to sinus infections sends me over the edge.

He agreed.

I reminded Steven that this story would have to be honest and true.

He agreed.

And I my sweet son that he has so many lessons to share with the world.

He agreed.

1 comment:

Keli said...

I am so glad you did an update to your blog. I have been wondering how you are doing. I am distressed to hear that Steven's disease is having more adverse effects on his body. I checked the VHL site yesterday to check on your fundraising efforts, what a great job you have done.

I think about the battle your son is fighting each day, and you are in my thoughts often.


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