5.25.2009

sometimes i forget i am here.


well, i mean...i forget that i have this place. i don't know if thats a good or bad thing. on the good side, it means that things with e have been good. nothing really to report other than we are still doing prophy three days a week. it still feels emotionally taxing at times. sticking your kid with a needle has come to be the easy part. its the mixing and the thoughts that swirl around in my brain while i am getting things ready that are tough. its a constant reminder that my idealistic thoughts of parenthood with regard to him will always remain just that...idealistic. and really, i didn't have any delusions of grandeur or anything. i just never imagined having a child with a chronic illness. my therapist referred to the situation once as me having a "sick child." and while i never use this term, the conversation stuck with me. he is sick. he will always be sick. nothing, well now anyway, will change it. and it sucks. it makes me mad. it makes me cry. and most of all, it makes me wish there was something i could do to change it. not just for him and our family, but for every family that suffers from this little known illness. it doesn't get the same sort of press as cancer or hiv or diabetes. but it is just as taxing and scary. i find myself worrying all the time if he is bleeding and i don't know it, or if some parental decision that we make will be the right one. the constant worry and second guessing is so trying. and i am not the most patient person in the world.

on the bad side, my not being here makes me feel like i have alienated a population of people that regularly check in on this site. its weird to me that people from all over check this place out...as far as europe and asia. and my lack of updating reminds me that there may be moms and dads suffering from the same anxiety that i suffer from, with nobody that truly understands it. when e was first diagnosed i wanted nothing more than to quietly separate my thoughts and know that i wasn't alone in my fears and frustrations. and i wanted someone to tell me that everything would be alright. and while i cannot promise that...because, really, who can...i feel like i can offer some sort of relief in knowing that doing the best you can will yield good results.

and, while i am at it, i should say to all you other parents facing the same sort of obstacles that we are...if you ever need to talk. or cry. or vent. i would totally be willing to listen.

4 comments:

Tiff said...

My daughter has FVII Deficiency. It sucks and your post SERIOUSLY echoed the thoughts I think every day. I can only imagine how difficult is was for parents before the medical & digital technology our children have today. Looking forward to touching base with you in the future.

tcintal@yahoo.com

ForresterMom said...

Hey thanks Sara for this. We must be on the same wave length right now. I've slacked on my blog for a bit and then Will got sick. Just the usual kid sick but that second guessing if it's hemophilia related just makes me crazy. You also reminded me that I really have to get back to my therapist!

ForresterMom said...

Hi Sara, I am trying to get back to the blogging as well and I came back here and read this post again. My husband always refers to Will as being sick. I personally never see it that way. In fact when I brought this up to our hematologist she said. Missing one protein does not mean he's sick! Not sure if that gives you food for thought but I'd tell my therapist to cram it if she referred to my kid as being sick.

Allison said...

:::knocks on computer screen::: Helllllllllloooooooooooooooooo?
IF YOU HAVE TIME FOR FACEBOOK, YOU HAVE TIME FOR THIS ;-)