Sunday, May 19, 2013

sometimes i forget.

sometimes i forget. 

tonight, the 6 of us went out to dinner. we're setting at a mexican restaurant passing out tortillas and eating queso when EJ stops and asks me "hey, remember when we lived in the hospital for 6 weeks..."

well, not really. 

in my head, it seems almost impossible that she was there for that long originally. where were the other kids? how did we rotate? what about work? how did we shuffle that around?

i know the answers to those questions, in reality. but in my head, it wasn't 6 weeks. 

i don't look at reese and think BRAIN TUMOR all of the time. i rarely do, actually. sometimes i can't help but tear up and think what bullshit it all is and think about everything she's gone through - and still has to go through, but day to day, she's regular reese. and we're blessed with that being the case. 

sometimes i forget about anything before 10/31/2012. my computer was running really slow tonight so i was going through and moving photos over to my external hard drive. i came across pics that i didn't even remember. tiny reese with a mop of hair standing on a chair in my kitchen, at the island. 


i barely remember her that way at all. not to say i don't have fun memories from the first 2.5 years of her life - of course i do. but the past 6 months have completely... overwhelmed? that part of my brain. i don't remember her walking, really - even though she was doing that since 13 months. i don't remember her going to school (which, i mean, she didnt really go that often/long). i don't remember a lot of specifics. 

but i can tell you most specifics of the past 6 months. some things are a blur, but there are details that i remember that normally would be a blip on the radar. 

a friend of mine blogged this week and it hit me hard:  (grayson's birthday is days within reese's. and they found his brain tumor on halloween night, last year, as well. thanks to the internet and blogging, i have found someone who "gets" me.) 

"I actually forget that in the whole of the United States only 2,900 mothers a year are ushered into a tiny room and told that their baby has a brain tumor.  I forget that out of 313 million people living in the United States Grayson is the .000009%.  At the end of the day, I often think, "It is what it is" and 90% of the time this new life seems very normal.  But there are moments when the enormity of this crashes down upon me and I feel like I can't 

The stats are what surprised me. Guess what, though? i don't want to be rare. i am sick of being a statistic. and i don't want to be a pro every day. 

But i am. Maybe i should be proud of that. But sometimes it just hurts. 

At the hospital last week, we waited all day. a very very long day. we ended up in the infusion room with one other family, waiting for our room on D6. I could tell that the other family was there for the first time - mainly because mom, dad, and brother were there. usually, not everyone comes to chemo clinic for most families - not everyone can take off that much work. eventually, we all go up to D6 together, the nurse tells me to slow down since "it's their first time". i walk fast in hospitals. But then i thought about how "pro" i felt. a pro i didnt want to be. i knew where we were going, how to get there, which elevators get you there, where their room is.... 

then we get to the elevators and an anesthesiologist gets off and says "hey!! how are you?! how's your girl doing!!?" so enthusiastically. he's my favorite. he was the one that let me in to the OR to help reese to sleep when she had her port moved. but do i really want to know so many doctors that we say hi in the halls?

i never thought that i would be able to tell people which floor does what, how to get to your car from xyz, and that the best food is here or here. i never wanted to be that person. i still don't. but i am. 

sometimes i forget about life before the tumor. its easier to forget when i see the advances that reese has made in speech, for instance... the before isn't as awesome as the after. then with her hand, that was a slow process since july. she was a quiet, but hilarious soul - and now she's just louder ;) 

on a good note, our oncologist is sort of ::eyepop:: about reese not needed her ddavp shot for DI. he said "i may not be that old, but i am old" and while he "hasn't seen everything" he has "seen a lot" and he has "never seen someone just be over DI" if that happens to be the case in the end. 

well, duh, thats bc reese is a miracle. and God wants her doctors to say "well, i mean, there was this badass named reese who somehow was cured of DI so who knows!" 

and they'll say the same thing about her tumor. at least that is my prayer. 

the onc kept saying "man, she looks so good, doesn't she look good?!" and "what a difference. wow." and for that, i am elated.

i have so many photos coming. reese's birthday, sawyer's preschool graduation, IG pics from in-patient last week... but right now this is all i have. 

thank you for every prayer. keep them coming - God listens. 

1 comment:

  1. Oh momma....I can only imagine. We go to regular check ups for our Gideon (heart issue....just had second heart cath with balloon and he's only 2) not anywhere near what that precious Reese goes thru but I get a TINY TINY glimpse of what you experience as your norm. So happy to heae she's doing better....I just love her! You are a super momma Amanda! Prayers and love from Michigan!