this is definitely an emotion that i feel a lot dealing with this disease. i feel like i am making real progress in understanding and coping with it all, and then.....nope.
evan had his blood tests done last week. i called sara (the hemo nurse) yesterday to check on his results and she said that his factor level came back all wonky at 0.6% so the lab tech was going to run another level and that she'd get back to me today.
i am thinking this isn't going to be such a big deal, because this has happened once before, and his labs came back at 3%.
yeah, not today. sara called and let me know that they re-ran his factor level and that it's at 1.1%. not what i wanted to hear. not even a little. this can mean many things, but she cautioned me not to get too upset over it...that we need to pay attention to the way his body is acting as a hemo. and that if he isn't having joint and muscle bleeds, that that's a good sign.
but to me...his mom...it's a kick in the face. it reminds me that i need to be more cautious when i pick him up and not lift him under the armpits, but instead scoop him under the butt and have him sit on my arm. it reminds me that i NEED to have him in his helmet all.the.time. no if's, and's or but's. i need to start checking him more for hot spots, or small lumps i may be missing. it means i need to start thinking about the possibility of prophylaxis. it means i have to remind myself all the time that my idealistic view of how my baby was going to be is being broken again.
and the hardest part (for me) is trying to do all of this while not getting sad about it. and while not letting evan know (however small he is...he'll know) that i am treating him differently. special. i mean, he is special...and delicate...but i don't want him to know that. and maybe he would never know the difference, but in my mind i know the difference. and i think i may communicate that to him somehow. and i don't want him to know my frustration of how i have to treat him differently. and its the having to treat him different, not wanting to treat him different, that really pumps my nads. i've always been proud of the type of mom i am. i think i am pretty damn good at it. i have a wonderful older son that is living proof. and to have to alter the things that i have done to turn him in to the wonderful young man he is makes me mourn a loss of something that never really existed with evan. and i suppose that makes me mad too.
on the bright side, there was no evidence of an inhibitor. so i guess i will have to take what i can get.
About Me
- sarasarasara
- I am a 31 year-old wife and mother of two. I live a standard suburban life where I spend my days shuffling my oldest to school, playing with and teaching my youngest, making meals, cleaning messes, kissing boo-boos, playing with our dogs, taking a little time to work out and trying to keep it all balanced without losing my head. I have very little to complain about and so much to be thankful for. I'm a pretty easy person to get to know, and even easier to get along with. I'm a little bit quirky, but I like that about myself.
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1 comment:
wow...reading this makes me wish so badly that this "blog kind of stuff" was as frequent 7/8 yrs ago as it is now. Reading this I can see how important it is to be able to vent your feelings, and communicate to others the importance of all of this! Me telling you that I've been where you are, and me-or anyone else-telling you that eventually you'll be much more comfortable and used to all of this, does not help you in any way shape or form right now...b/c anyone that has truly been there knows at this point you are in right now, all of this just really sucks! Keep on moving forward....it really does get better, but you'll just have to find that out for yourself.
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