so this is my first post.

well, this is quite a step for me. my very first post on my very own blog. it's sort of strange to me...sharing my thoughts and feelings about something so personal for anyone to read. not that there is much that i keep to myself, but it's the voyeristic part that sort of weirds me out. i guess it's just the venture in to uncharted territory that has me scared and excitied and nervous all at the same time.

so, welcome to my world. pull up a chair. enjoy your time here. feel free to comment, or ask questions, or tell me i need to stop whining. not that i anticipate much whining...i'm not really the whining type.

and here i go...the beginning of our journey with hemophilia. evan was born on july 3, 2007 at 4:11 pm. it was a dream birth...so easy. in fact, too easy...my doctor missed the birth and a doctor from a totally different practice was pulled out of the hall to deliver our little guy. he was so beautiful...so sweet...so perfect. michael and i enjoyed our stay together with evan in the hospital, but were eager to get home.

on the morning we were supposed to leave, a nurse came in to check on me. as she was leaving, i noticed e's ankle bracelet had fallen off of him and was laying on my bed. the nurse offered to put it back on him on her way out...and when she did, she noticed his pants were soaked in blood. she whisked him off in his bed down to the nursery to try and figure out what was wrong with him. it took nearly an hour to get the bleeding under control (which was all caused by his pku test). the nurses called the nicu doctors in to help, and they immediately suspected hemophilia or von wildebrand's disease. a couple of hours (and several tests) later, dr. wynn (the on call pediatric hemotologist) came to my room to explain to me what was wrong with e (michael had left to go home for a bit and was on his way back to the hospital). i was in complete and utter disbelief. honestly, i still cannot describe the sadness and confusion i felt that day. i didn't understand why my son had a genetic disease when there was no history in our family. i couldn't figure out why he got this disease. i felt myself racing in my mind to find a reason...trying to think of something i could have done differently while i was pregnant to have changed it. i felt a lot of guilt...and a lot of sadness. thoughts of ryan white raced through my mind, and the idea that my child could be infected with hiv while being treated for this disease like he was brought me to tears.

but i went to the nicu and stared at my brand new son...who had an iv in his scalp...laying there looking perfect and completely unphased by what was going on (which, i mean, he had to have been...he was only 48 hours old, but still). he was still so sweet, and so beautiful and so perfect...and i decided that i wasn't going to let this define him.

so, fast forward to now. 14 months later. and he's still perfect. in fact, more perfect than i could have ever imagined. and he's going to be alright. and i'll write all about his first hospital visits...but not now. i think my first post is long enough.