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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