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. 

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Thursday, October 2, 2014

alienated.

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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Thursday, September 25, 2014

new words.

we tell the girls we love them all the time. miller says it so often. it makes her happy to tell us that she loves us. its so sweet. at night, for a very long time now, i say to reese "you love your mommy?" she nods. "good, because i love my reesey." and i kiss her goodnight.

when she was dx at 2.5, she didn't talk very well - and in the back of my mind, i always thought about how i have never heard her say "i love you." 

until now. 

reese and miller have started to say "you love me?" or "______ loves me..." all the time. until finally reese turned it around and said "i love you." and yesterday morning "i love you, too..."

melt. 

there's so much she says, lately, that has me laughing. when she's mad, she tells me "you hurt my day!!" she tells me about how she plays outside at school, with chalk. . that her friend tried to bite her, but her teachers say "don't touch your friends". she tells me about how miss amy gives her squeaky kisses and miss michelle gives her the last goldfish. she has to "go to your pack-pack and git your snack. and sit at da' snack table!" she starts stories with "okay..." and then goes on. as if she has to brace you for what she is going to say.

its so fun.

tonight was perfect. after dinner, i tickled miller until she couldn't breathe. reese got on my back and pretended she was a monkey. we took them upstairs, i read pete the cat and some spider book that we've had since aidan was a baby.

this is how i always thought it would be with kids. i didn't think that i'd be talking to nurses about port removal dates and therapists about a "bad arm".

i didn't think that i would be high 5'ing my 4.5 year old for walking into school without her walker, but that was me. (you can watch her HERE.) and i was proud. very proud.

"i not need to ho'd hands." oh yes you do. hold my hand, reesey.... but, instead, she crosses her arms and smiles in defiance and i praise God that she can do all of this.

life has been pretty normal. i try to go to the gym in the mornings, i try to go to the store when i dont have 3+ kids around. i have fall photoshoots ramping up and so i am editing a lot. i am currently planning out my fall decorating list for hobby lobby - the kids want the front entryway to be scary. ;) last wkend we went to the balloon festival. EJ and i also enjoy an amazing night out with carson's crusaders (who sent us to GWL last year...) - we made new friends, drank some wine, and got to know other people like us.
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halloween is the next big holiday. i want to hate halloween, but instead we'll embrace it. embrace the pumpkin patches and trick or treating. because reese is here to enjoy it. i am excited for costumes, and walks around the neighborhood. i am excited to make fires and celebrate good days.

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