Saturday, February 28, 2009

National Rare Disease Day

Today is National Rare Disease Day,
a day sponsored by the National Organization for Rare Diseases
for celebrating those fighting the fight of rare disease and
honoring those who search for the cure.

My heart breaks into a million happy pieces at the thought of a day celebrating my son and other warriors like him, and my mind races with a million more thoughts of honoring an organization that knows our struggles.

Proper homage is due.
To all.

But while my heart and head are in one place, my feet will surely be traveling in a different direction, because at this very moment I need to...

...get gas.

...buy a gift bag, card and present for one of our favorite little guys who also happens to be celebrating a birthday.

...and not forget shampoo again!

...find coffee!

...pick up Steven at school.

...celebrate David's momentous birthday with a riotous game of family bowling.

...run a camera and ask the questions to capture my sweet boy's thoughts on living with VHL.

...eat dinner with my favorite boys.

...and then return Steven to his dorm.


Because really, living with a rare disease is all about the living!

1 comment:

Britt-Arnhild said...

National rare disease day. How great to have a day to focus all these rare diceases.
I am happy for you.

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