So you can share it!
We have been getting out of the house many times lately, salvaging a little bit of sanity. Today we ate lunch out, replaced Steven's watch battery and ended our errands by picking up facial cleanser for David.
As the boys romped around with their typical amount of teenage energy, the sales woman started asking me questions about Steven and David. The conversation started with typical questions about age, high school, and summer plans.
Then she asked about Steven's scar.
I was able to share a bit of information about VHL, hemangioblastomas, and genetics. Without being too technical or maudlin, I was able to explain that this disease has no cure. I told this woman that Steven's bad genes will play havoc with his body for the rest of his life, and this will not be the last time that his skull is opened.
Then she asked when the surgery was.
I was able to share a bit of Steven's story of strength and determination. I was able to our story of deciding that we would live without fear. I was able to explain that this disease has opened our hearts and made me a better parent. I was able to share a bit of faith.
It really is refreshing to share Steven's story!
As the boys romped around with their typical amount of teenage energy, the sales woman started asking me questions about Steven and David. The conversation started with typical questions about age, high school, and summer plans.
Then she asked about Steven's scar.
I was able to share a bit of information about VHL, hemangioblastomas, and genetics. Without being too technical or maudlin, I was able to explain that this disease has no cure. I told this woman that Steven's bad genes will play havoc with his body for the rest of his life, and this will not be the last time that his skull is opened.
Then she asked when the surgery was.
I was able to share a bit of Steven's story of strength and determination. I was able to our story of deciding that we would live without fear. I was able to explain that this disease has opened our hearts and made me a better parent. I was able to share a bit of faith.
It really is refreshing to share Steven's story!
Many people have asked what they can do to help.
Most obviously, prayer for Steven.
Pray for a cure for this diseaes.
Beyond that...
All we need is for you to share his story!
Let more people know about this disease!
Let more people know about living with strength of spirit!
Share the story of Steven!
(And, strange but true, just by searching for "Bible versus about sleeping peacefully", one more unique person knows about VHL! HA!)
1 comment:
I do the same thing when people inquire about my mother. I hope there is a cure someday.
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