Tuesday, October 28, 2014

sounds of the in-between.

EJ and reese after bath1

"i need a hug."

she's never sad when she says it. she says it because she loves us. and wants a hug.

"mommy. i need you. i need a hug." she shakes her butt over to me and i gladly oblige.

"you fix my day? i fix all'body's day!" when she wants us to make her happy. or do something for her. or tell us how she made someone else's day better.

"stay in your cage! click!" as she pretends to lock me on the couch so she can be naughty.

"dont tell daaaaaddyyyyy..." and she giggles so squeakily away.

"i peed in the potty. so... CLAP!" lol.

"all'body love reesey." indeed they do.

everyday i spend 90% of my day thinking reese just has a pixie cut. and 10% of the time staring at her, wondering what i am missing.

...if i am missing something important.

i am caught between two lives. all of the time. back and forth. talking on boards to moms whose children have reese same tumor. talking to my friends whose children are perfectly healthy at school drop off. i cannot figure out where i am supposed to live.

so here i am. in between.

fully knowledgable of life's greatest fears coming to surface. two years ago, this week, i was a mom who had a sick kid. reese was taking antibiotics that i thought were making her throw up. i begged that she feel better soon. at first, her feeling randomly sick was an inconvenience - having to pick her up so soon after drop off at preschool. until finally i said "nevermind, we'll re-start school next semester"... but we never got to do that.

i am stuck in between seeing miller grow up and be the 2.5-3 year old that i didnt get from reese. i wonder how reese would have been had she not had her tumor. she wouldn't have been reese, so it doesn't matter, of course,  but its interesting to think about. it feels like a lifetime ago that aidan and sawyer were this age - and besides, that was before. back when brain tumors were sad things on other people's blogs. back when i cried for other people's children, but felt that safe distance of "not me" after i exited the browser.

its never you, right?

last night i had the weirdest thought. i was thinking about the years. just random years for some reason. 2005 when i met EJ... 2006 for aidan... la dee da going through the years... and got more recent...

2013 was good. 

i caught myself thinking it and then immediately tried to make myself retract. but it was already out there. why. why would i even say that? and honestly, its like i had forgotten everything. but i can think of so many amazing things that happened in 2013. we consistently watched reese excel beyond what so many people thought.  i spent overnights in the hospital with reese doing things that made us so close - even if chemo was involved.  i was pregnant. corbin came and filled a hole we didnt know was there. the perfect fit.

so much love wrapped over so much pain and fear.

but i guess the amnesia of it all set in a bit. the whole thing is scary, as its still so fresh. as we are still, and will always be, in between. the people who "get" both sides. and don't really have a bench to sit on. always standing around feeling a little bit more involved in each side. too many details and what ifs to keep the blinders on.

but i will gladly give those hugs. i will hurriedly say yes when she says she wants to rub my shoulders while im changing a baby diaper. she checks in while standing behind me with "that fix your day? you happy?" ill laugh at her jokes, ill smell her stinky feet, and ill pretend as if i dont know that she only wants a snack when she says "mommy? my belly hurt." i listen to her play w sawyer at bedtime, her room a mess with little people school buses and castles. i laugh as miller and reese run up to me while i am in another room, naked from the bottom down, with giggles of "look at our butts!" as they scamper off to another room to look for trouble.

almost 2 years later and i am proud of our family - of our strong kids. i am proud to be in the in-between with these 6 people.

this fall has been filled with festivals and dance events, costumes, and pumpkins. we have a busy day on friday - scare on the square and then trick or treating for the first year in this house.

it will be a halloween that we deserve. with reese walking door to door for candy she won't eat. laughing with her sisters down the sidewalk. and dancing on the street with friends who love her. every day is a battle between that 90/10 split, but each day i learn to trust my confident, but damaged heart and let God lead the way.

IG: punkfictionv4

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Wednesday, October 15, 2014

full circle.

reese port out bw1

 november 2nd, 2012, we told reese we loved her. we gave her kisses. the nurse warned us that her pre-meds would wear off soon, so to say we'll see her later and go quickly. we turned around, walked down the hall towards the elevators, and collapsed into each other's arms. we collected ourselves as best as we could and headed to the OR waiting room. first up was waiting for the general surgeon to come tell us how him putting an external central line went. they took us to a room and his sweet face, who we'd signed paperwork with before, explaining the risks of that tiny part of her hours long brain surgery, told us that all went well.

today, that same surgeon, who i havent seen at any point in between, took her port out. we sat in a similar small room as he said all went perfectly,  to see a doctor in a month to make sure it healed properly, he shook my hand at the end of a journey - instead of shaking my hand to welcome me to a nightmare.

when we were figuring out a date for port removal - the first available looked like halloween. i gave excuses about that sort of being a damper on the whole fun evening. which is true. but in reality, it was just too much for me. i asked him to look at other surgeons' schedules and he called me back with today's date.

im sitting in bed right now with a new reese. one that doesn't have to go to the ER for a 100 fever. who i give tylenol to, like the other kids. she demanded dance tonight. there was not one question on if she would just sit w me while miller took their class. and when watching her tonight, it was like she had no surgery today at all. she pulled down the top of her leotard for older girls that she looks up to and said "see? its out."

i don't forget that i do not know what the future holds. i dont pretend to think that we still dont have battles ahead of us. i am hopeful for reese's future. i look at her and am amazed. we talk about kindergarten and what services we'll be looking for, what we will want her IEP to say, what classes we want to be inclusive, if she'll get any spec ed or not. i can't picture her with longer hair, but every millimeter it grows is one more chunk of time that spaces me out from the bald beauty that i once knew.

it seems so far behind us...

...but its not. its right at our back door. i just pray it never knocks. 

IG: punkfictionv4

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Thursday, October 2, 2014


i am not angry. 

i am just not. i was devastated at diagnosis. i was overwhelmed when chemo started its new normal in our lives. i have been annoyed with comparisons to others. i have been in bad moods. i have wanted to tell people to shove it. i have cried more than my fair share. i have vented to friends more often than they probably would like.

but i have not been angry.

there are times when i have felt as if not many people understood, nor currently understand, things about our daily lives, but they try. they ask questions, friends offer any sort of piece of relational conversation they can. and i am grateful that they choose to try. what a lonely life i would lead without those people.

i have friends who try not to mention their daily struggles because "ugh i know it doesn't compare". i remind them that its okay. everyone has problems. everyone has a sick kid sometimes. and while they may not end up in the ER at 4am bc of a 100deg fever, its still annoying for them. someone still has to miss work. someone is still up cuddling in the middle of the night.

i enjoy the normalcy of those around me. i enjoy the monotonous days. i enjoy the busy cycle that we keep ourselves in to be able to let the kids do all the extra currics that they want to enjoy. it doesn't bother me that reese is in the 2-3 year old dance class and not the 3-4 year olds. she's walking and playing and enjoying herself, right? i dont feel robbed. i dont feel as if she has been robbed of something.

and i am not angry.

she can't play soccer next year, i bet.
there's a chance she's not ready for kindy and stays behind or takes it twice, maybe.
who knows the effects that chemo will have on her later. will she be able to have kids? what other side effects will take their toll later in life that we'll blame on 16 months of high dose chemo?
she may be super short. or have to take growth hormones. or maybe just short (like really short) because we wont do them. who knows. that decision isn't for now.
she doesn't have "friends", per se. she has a lot of people she loves. people she begs to see and enjoys seeing all the time, but they aren't 4 year olds. they are, on average, 30 years older than that. "she gon' come play wit me?!" when i say my friend(s) are coming by. and thats okay. she loves her classmates, but names her teachers as her "friends".

but i guess its okay because id rather have her here. in any which way i can have her. so whether thats with a short, non-sport playing, adopting mother - then ok.

i say all of this because i generally feel like a total asshole on some of these brain tumor/cancer/mom pages. like the only one who isn't so angry of the things she is "robbed of!" i am not angry at things people say to me out of wanting to relate. i do not get mad when people "look on the bright side", but maybe thats because i do, too. i never know if what i am going to type to some people is going to make them angrier.

i think about how,  before her brain tumor and chemo, i didn't know, for fact, what her life would bring. so how can i be angry at those things she may lose? maybe she'd want to adopt children? or marry a man with some of his own? maybe soccer is something she'll hate. maybe her lifelong best friend will be in that 2nd kindy class, if she needed it.

but instead, i think about that limp body on halloween 2012. the girl who barely woke up. and then i look at her today. 

sunday afternoon, EJ ran miller to children's legacy ER bc she was breathing labored and has a horrible cough. they said it only sounded a tiny bit "in her chest", but her HR was high - so they did an IV (she didn't cry) and gave her a bolus of fluids. that didn't really help so they did a chest xray (all clear) and then was sent hom with high dose abx for whatever she has plus a found ear infection.

but EJ and miller facetimed us. reese chatted for a min with miller and then i got the phone and sat w aidan. miller held up her IV arm and aidan had to leave the room. she just burst into tears. i called her back to talk about it. "she's sick. i dont want her sick. and i dont want her sick like reesey." reese heard this and hollered from the other room "huh?! i not sick!!"

and that's true. even a 4 year old can see her own potential and purpose in the world.

we all chatted about how reese is not miller. is not aidan. sawyer. corbin. any of us.

this week has been so great. got a call for port removal oct 15th.

almost 2 years. 

2 years ago, october was hectic. toting around a sick 2.5 year old with seemingly no reason to vomit. doctors... home... ER... home.

i am grateful for how far we have come, so much we have learned, and for this peaceful time in our lives, right now. no matter what comes in our future, i am grateful for the now.

no one can tell you how to feel when your child is dx with something life threatening. no one gets to tell you how to feel. that power is within yourself. no feeling is right or wrong. no feeling is better than others. but sometimes i feel a bit alone with mine.

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