i used to be scared of this disease.

its true. when evan was diagnosed with hemophilia, i really fell apart inside. my emotions took over and i cried what felt like nonstop for days. i was confused and terrified of the unknown. the only thing i had ever heard about hemophilia was when i was a kid and watching the made for tv movie about ryan white. yep, that ryan white...the young boy who died of aids. my stomach turned. my mind raced. what was happening? why is it happening? was this karmic justice for something i had done? something i hadn't done?

the first few months of e's life are recalled in my mind as a rollercoaster of emotion. i remember the first time i took him to st. joe's to talk with sara about hemophilia. he was eight days old. she bombarded me with books and pamphlets that i didn't want to face. i didn't want to read them. i didn't want him to have this. i wanted to hide from it. i remember leaving that appointment with my eight pound baby and driving over to my mom's house so my aunt from virginia could meet him. we listened to coldplay lullaby music and i sobbed while trying to navigate the roads.

and then, one day i found a bruise. for no reason. it was just there. a big one that seemed to eat up half of his arm. it looked enormous on this little creature. i remember staring at it and just looking and feeling it. i cried. i was scared. and when i composed myself, i remember looking at my son who was nursing and oblivious to what i was feeling and thinking "wait a minute, this is him...this isn't me." and i stopped.

i changed my view. i had to. i could let this affect him in the negative way it was affecting me, or i could learn to embrace it and teach him the same.

so thats what i did.

and you know, barring a three month period of absolute fear and multiple hospital stays, i think i have done a good job.

and as i look at him today, i know he is going to be alright. he's a fearless two year old that happens to have blood that doesn't want to cooperate sometimes. he's an amazing child who doesn't even notice that he's getting a needle stuck in his chest three days a week. he is an amazing person that wants to play and learn and explore. he teaches me so much. he reminds me that life is good. he allows me to remember that we can learn to adapt and live with things instead of lamenting them.

evan is a totally amazing little boy. he will grow up to be an even more amazing man. i just know he will. and i think he will teach many people along the way how to embrace the unknown and have compassion for others that just happen to be a little different. and remind them that different isn't scary. and at this moment, and probably most importantly, he has taught me that there is no reason to keep being afraid.


i've cancelled my hiatus.

okay, so i wasn't gone on purpose...i think i just got super lazy? ok, maybe i didn't do that either. you see, my original purpose for starting this blog was to document what we were going through with e's disease and share with others how we handle things and where my head, as a mother through all of this insanity, is at. thankfully, we have had a pretty easy go of things this past year and there hasn't been too terribly much to report.

i suppose one item to note to other parents out there is that we did get through seasonal illness without a hospital stay. twice. i decided to meet with one of the four hemotologists in the practice and plead my case about my knowledge and ability to care for and access e's port. and that if there were a cold this season, which there inevitably would be, that i would be more than happy to treat him at home until we were sure that there were an infection in his port that would mandate a hospital stay. i had the full backing of the head hemo nurse sara, and it was decided that i could handle this stuff at home if we should need to. and i did. twice. e had two horrid colds this past december and none of them landed us in the hospital. and thank whoever you believe in for that, because the first fever lasted eight days. it would have been miserable in there for over a week.

we are still on prophy treatment, but have gone back to a monday/wednesday/friday dosing schedule. e had some bloodwork right after the first of the year and his levels seem to have elevated back to the 5% range. nobody seems to know why his levels have fluxuated so much, but we are certianly pleased to see his levels close to where they were during his first six months of life.

i intend to update more often (shout out to allison for kicking my ass into writing), even if the original intention of this site may have to shift to keep up with the frequency.