Bonus Round Patient Pages
Encouraging patient/doctor/caregiver communications


Monday January 21, 1999: Going It Alone

dear sparky,

well, i want to talk about the "going it alone" parallels in my life. it hadn't really occured to me because i often take my parents for granted--but a friend mentioned how hard it must be on my parents and it really got me thinking. so i decided that i might dwell on it and see what came up.

this disease is often harder on them then it is on me--it's like "at least i know what's killing me"... i'm fighting something very real and something very tangible, i'm able to take medicine to make it better or i'm able to actually feel the pain when it isn't. mom and dad don't even have that luxury--they are fighting me fighting the pain. and i can't even begin to imagine how hard that is for them--especially since i'm their little girl.

mom and i talked about it briefly today and she mentioned again how she would watch me toss and turn at night and how she would just want to wake me up and hold me--but that she couldn't. that she didn't know what to do, she didn't know how to help me. and she told me today that she gets so worried and so afraid--and that she doesn't tell me because she doesn't want to frighten me. that she and dad will sit up all night talking and worrying about me and won't say a word to me about it the next day.

and i just thought of how i would do the same thing--i wouldn't tell her when the pain was so bad that i would cry myself to sleep, that i would try to protect her from it--and all this time she's been protecting me. i've been doing a lot of talking with mom during this sickness and i try to tell her everyday that just having her to talk to and knowing that if i ever need her, that she's there for me--that's the most anyone could ever do for me. i don't expect her to take the pain away, and i don't even expect her to fully understand what i'm going through because i don't even understand it all sometimes... but it means a lot to me knowing that i'm able to go to her for comfort.

i haven't even mentioned dad--this is impossibly hard on him. i'm his little girl... the little girl he would take shooting so i could learn how to keep away bad guys--and here i am, fighting something that dad can't protect me from and can't keep away from me. even though he never talks about it, i know he cares, that he doesn't talk about it because it's hard on him.

it's just so hard on both of them--what does every parent want for their child? for them to be healthy, to keep away the bad guys--and mom and dad can't do that for me. haven't been able to for ten years and i wish that someday i can be as strong as them. i can't imagine how hard it is for them to sit in waitings room while i'm operated on, or even how hard it is to hold me while i cry about the pain-knowing full well that they can't do anything to make it better.

i admire them a lot for it... for having the strength to let me fight this on my own, and for being there for me when i need them. for giving me the freedom to be an interactive participant in all that happens to me--for never treating me like a stupid little kid. for letting me make a lot of my own decisions about treatments and whatnot.

but as hard as it is on them--and mom doesn't pretend that it's easy anymore... she never fails to tell me that she'd do it all over again because that's how much she loves me. that all she's ever wanted for me is to be happy--and that she's proud of me because i'm able to be happy even with all of this going on around me.

it's nice knowing that someone loves me enough to go through hell and back with me, and that they'd do it again because that's how much they love me...

love you lots,

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