Wednesday, April 14, 2010

Amniotic Band Syndrome

Some days, I ask why me.  It's like I rose my hand and jumped up and down when God asked who wanted a different challenge on Earth.  A challenge we both knew I could do.  But one always finds that accepting the challenges, as rewarding as they may be in the end, are still difficult to overcome.


If you know me well enough, then you will hear me crack jokes about myself, including my hands.  And some people give me these weird looks, almost like I shouldn't be laughing about something so personal.  But how am I supposed to treat my hands?  As a disability?  They don't disable.  Sure, they slow me down sometimes, but I find my own path to doing things.  And if I can't bring laughter into this world, then what's the point?  My hands are not meant to receive guilt and empathy from anyone.  Sometimes, I just want people to see things from my view even though it may be a ridiculous view.



My mom once showed me a paper she wrote for an English class in college (the baby me came before college).  It was about her first experience with childbirth.  A type of experience that almost no other moms will experience, and I hope they never do.  The baby that I used to be (some 22-odd years ago) was taken away from my mom the minute she came into the world.  The doctors wanted to be sure that my physical disfigurement was only exterior and not interior.  Two hours and a million tests later, I was deemed healthy aside from the hands and feet.  Now two hours may seem like nothing, but for a just-barely mother who has been told nothing about her baby?  I believe that has to be one of the worst kind of agonies out there.



I have had around seven surgeries, three of which I can remember.  These surgeries began at two months of age with separating my toes.  And I am very much thankful for that because I can wear flip flops nowadays.  The surgeries on my hands included further separating my fingers, removing tissue from swollen fingers, adding a bone to a finger to give it stability, etc.  This was all done before I started kindergarten.  A lot of memories in a big blur and a lot of non-understanding at the time.


I have so many stories involving my hands.  So many statements.  So many weird and original point of views thanks to my hands.  And depending on how long you've known me, you've heard some stories.  Maybe everything you're reading in this post is nothing new.  Or maybe it is all new.  All I can say is what I have mentioned is only the tip of the iceberg.  And if you include everyone who has ABS, then you're looking at an ocean-full of memories and knowledge.

How I would like to end is to mention a friend.  If it weren't for our common syndrome, we would never have met each other.  He is going on a bike ride this summer to raise hope and awareness for amniotic band syndrome.  Check out his blog.  He has a story.  I have a story.  Everyone has a story (regardless of what they were born with).

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