another year passes.

In 2012 we went to scare on the square.

I was excited that all the girls were dressed in their super hero costumes, but reese was still so sick. She had been to the ER, they said she had UTIs, I was not very content in that answer, but I am not a doctor, so I guess I was wrong. She slept all the time. I barely got her awake to put on her costume. Her right arm ("bad arm") had been not working for months. Doctors sort of gave us lame answers - like saying she broke it (even had an x-ray!) and putting it in a cast. Maybe radial nerve? Maybe should get an MRI? but she had been throwing up so much that we could never get her sedated. I find it ridiculous that none of these things added up for any medical professional, but it wasn't in our time - it was in someone else's hands.

Downtown, I know now, that people saw her eyes act strangely, then, but didn't know how to tell me. It doesn't matter, of course, because when EJ saw her eye float later, they went to the ER... again... to finally get a CT scan.

Thus began the worst days of my life.

Everyone stepped up: friends, family, strangers. We were instantly surrounded by doctors and nurses and sanitizer and fear, but also by love and prayers and warmth from all over the world.

When we got there, she was actively dying in a way... as she had been for days. Her heart rate was somewhere in the 30's and 40's. She was barely responsive. The fluid in her brain was so much, but even that day she would have times of totally "okay", so as a parent it seemed insane to think it was so bad inside.

...but now we are 4 years later.

She had to get another haircut the other day bc it was getting so long and needed to be evened out. This year, the girls were "decades" and we went to scare on the square to dance the night away with our very best friends.

We are oddly in a same type of waiting space as we have been before. Only, this time, instead of wondering what we are working with, if she will need more surgery, asking naive questions about chemo, checking to see if her body will handle her own pituitary functions... we are just waiting on a new medicine to be (hopefully!) approved while we go to dance, have dress up days at school, laugh at the dinner table, cuddle at nighttime.

4 years is a lifetime. I look back on what we've done in 4 years and am so grateful to have so many friends be by our side along the way. Here's to many more halloweens filled with dancing and laughter and love.

sounds of the in-between.

"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

scare on the square and ToTing.

last year, i didnt post halloween photos until november. when things had settled down a bit (hardy har).

but this year, on november 1st, i am going to tell you about our super fun night :D

downtown mckinney is so much fun. we hung out at the dancer strong booth, aidan danced, sawyer ran around with friends, everyone played with reese and miller, and we all hung out and had a great time with great people.

costumes made by: Whimsical Wende
all headbands from: Miah Rhodes

and i hope you all like reese's stick on earrings :) she wants to have them pierced like A and S so bad - so aidan fixed her on up last night lol

i took the girls home, ate a quick dinner, put miller down to bed (she had had it lol), reese in PJs, and it was ToTing time!!


reese handed out candy ;) and even got in her walker to do it!



we went to bed and the only peep i heard from reese was her sweet hand on my cheek in the wee hours of morning saying "hi mommy!!" bc she wanted another ice water ;)

thank you for your texts and messages yesterday helping me remember that halloween isnt a day of sadness - its the day she started to get BETTER.

now on to thanksgiving…