Tuesday, March 11, 2014

too much.

it's like i can't write a "things are so awesome!!" blog without getting kicked in the gut.

i do this to myself. i realize that. i can't unclench at all. i see everything.

i have a few pics of reese almost 2 weeks ago, when reese was in the hospital for RSV. middle of the night tv, brushing teeth, playing with all of the things she can find in the room ;)

reese march stay2 reese march stay sb5 reese march stay sb4 reese march stay1 reese march stay sb1 reese march stay sb2 reese march stay15 reese march stay sb3

she came home to heal - as well as she could… her ANC was 1000 when we left, but going down. she gladly went to school on wednesday morning. so happy to be going. only to find out, that afternoon, when we got vinc, that her counts were zero. i didn't know, previously, that they weren't on their way up.

on saturday mid-morning, i sent EJ back to the hospital. reese was just not feeling well really - and then she coughed up phlegm and sort of puked. which sends me into a anxious spiral that does not compute any other way except GO.

she is constipated. yeah, neat. her HR got high, she doesn't like to drink bc her belly feels full, that makes her sodiums go up a tiny bit (still nothing big deal), but her belly hurts. she was fine, of course, and figured they'd watch her overnight and then leave early. they were home sunday (after time change ::yawn::) by 10am.

we've spent the past 2 days getting off of the huge unnecessary steroids and trying to get poop out lol

yesterday she was tired and cranky. super cranky. she had her hearing test and was basically too tired to pay attention the whole time. so we'll have to re-do. today she was more like herself, but the belly pain would get in the way. long story short - we gave her miralax tonight and hope that does the trick.

i hate seeing her any other way but happy. it makes me uncomfortable. and sad. and nervous.

funny thing, while writing this, i got a text from another tumor-mom just to let me know everything with be alright. and a message from my mom saying the same thing. ha.

but that doesn't mean i'll sleep tonight. or the next month until the next MRI (april 15). we'll still have one more chemo after that. so 2 more "big chemos" total.


anyway, ive become non-sensical, really. but in the heart of it, i know all will be okay. even when i let my mind race in the downtime. well, i should rephrase. i dont let it do anything. my mind traipses into the dark what ifs and "but remember what happened to…" or asking myself what i would do in some sort of morbid or horrible sad situation.

but as i read today (and she texted me the same thing last week) - what does worrying do? nothing. it robs me of precious moments with my family. from hearing giggles. from getting cuddles. from the sleep i need. from the happiness we deserve.

i pray that the doctors continue to lead us with the right medicine. with the right decisions. that God gives us the most knowledgeable doctors we can find. that those same doctors trust me that i know my baby. that they continue take me seriously when i feel something is wrong. i pray that i am able to trust God. trust the process. and to trust her body.

today while i was driving, i was thinking about it all. the gravity of it. it was like i was back in 2012, thinking about someone else's story… another blog… another family, but only its mine. i look back in my car and see my 5 little babies. perfect 5 babies. how different our lives may be if reese was 100% healthy. but in the same breath, when i ask God for normal - im not asking for pre-dx. im asking for as best as she can be now. im asking that every day be the good days. forever.

i'd like 2 steps forward and no steps back. i feel like at this point, thats not too much to ask.

luckily, we have love to tide us over. family and friends. and that my girls have each other. forever.

#sistersarethebestmedicine (IG: punkfictionv4)

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1 comment:

  1. God bless you and your family, Amanda. May He bring you peace and comfort.

    Your strength through all of this is truly inspiring!