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 did it!

well, i did it. i accessed e's port today. the nurse was here and asked if i still wanted to do it...i sort of hesitated and she said "yep, you can do it." so i got everything ready, and i didn't even screw up putting on my sterile gloves and keeping them sterile. and then i accessed him. it was such an amazing thing. i was scared and nervous that i was going to mess up something, or hurt him...but it went so well! he laid there and we sang songs as i infused him...and he didn't make a peep when he saw me with the needle. this is such a huge deal for us...it means that we can travel without worry now. it means that if something bad happens and he needs to be infused right away, i can do it myself. and, of course, it is just another step on this crazy hemophilia journey that i seem to have conquered.

when e was first diagnosed, i was so scared...and so, so sad. i honestly mourned my idealistic views of his life for a long time. hell, i still mourn from time to time. but its hurdles like this that make me realise we are creating a life for him that is full of capability and hope and independence. as a mom, i work so hard to acchieve that last one...independence. and i have done a hell of a job with noah, and have been scared that i would coddle evan too much to allow him to be like his big brother. but after i find that i can handle the tough parts of this disease, i realise that i can teach him to handle them too.

and, for your viewing pleasure, here are some more recent photos of him. he's growing too fast =(

giving daddy "mwah's"


lounging with daddy on the couch


snuggling with "wowah" and "so cozy" (his blanket)


acting silly wearing noah's army dress up goggles

entry has been made.

well, e got his first infusion yesterday. i have got to say that emla cream is nothing short of amazing. we have had some toruble with the nurse that was supposed to come out here, so i took him to st. joe's until we can find someone that is on board with the way we choose to access his port. when it was time to lay him on the table he got really nervous...he knows that usually means a lot of poking to get an iv in. plus, there was a nurse (that he has never met before) holding him down with her "hug" and she was wearing a mask. we were soon able to distract his apprehension and anxiety by singing "head, shoulder, knees and toes" and he didn't even notice when sara accessed his port with the needle. in fact, he didn't notice she was doing anything at all. it was great.

now i just need to get comfortable with all of this so that i can go ahead and start giving him the infusions.