Tuesday, February 24, 2015

i am that strong.

In the momcolgy/tumor/diseases/whatever world, there's always the mantra of "I am not as strong as you think".

But, actually, yes I am.

I am not happy that I have to know this. I don't feel superior or that it is some level of mom-hood that I feel everyone should need to achieve. But I do feel that strong.

and so are those other moms, who feel as if they are doing everything out of necessity, only. That you are no better than other moms in similar situations... That your kid is the only strong one. Let me tell you, you could easily drop the balls in the air. You could decide to leave. You could run. But you don't. I have said before "you do it because you have to" and that still holds true. But strength can sprout from necessity - strength is not simply doing something. It's who you are and how you respond TO that something.

reese port out bw1
When I hear bad news, news that rocks the known world, I still have to change diapers and put babies to bed. I still have to make dinner and do laundry. Because those things matter, too. I have other children. I have a family that needs me.

When Reese had inpatient chemo and would puke on me in the night, I still have to change my clothes and get back into bed. And I don't do that because I have to. I do it because I want to. That is why I planned ahead and packed extra clothes.

Holding hands through blood draws and port accesses or saying "it will be okay" over and over through any other procedure is possible because I am stronger than I thought I was. Back when I would read other people's blogs. When I followed other families and thought, how? How do they do it? Then it became us. Then I understood.


I can't worry about anesthesia like I see people do when their child will only have it once in their childhood.

I don't have time to think about the height of a fever when we are packing up in the middle of the night to run to the ER. I don't have time to post a "wwyd" on a message board.

Being strong doesn't negate emotion. It doesn't mean that there isn't a heart pounding, gut wrenching fear that hits at any point in time. It doesn't mean my faith doesn't waiver. It does not mean that sometimes life seems unbearable.


But life is about choosing your moments. I choose to focus on happy ones. I choose to make the best out of any situation. and I choose to be strong. It means looking at today, instead of worrying about the future.

Are our children stronger than we are? I don't mean only the sisters and brothers, but the ones with the brain tumors or other cancers... Of course. I am not the one who puts on the "bubblegum" mask to go to sleep, possibly waking up in pain. I am not the one who doesn't understand why they have to go to the doctor so much, but siblings don't. I am not the one who feels sick or wants to sleep after chemo. This does not define her. It does not define our family. It is merely a part of our journey. It is a chapter that is long and hard. One that, if I could choose my adventure, would have picked another page, at times. But along the way, it taught us how strong we can choose to be.

reese march sepsis14
a8168858ea4b11e2855922000a9e0723_7 10864749_773484619372989_486087938_n 47de4822a09e11e3b9f2120cbb90aa70_8

Don't forget where they learned that, though. You showed them that way. You showed them how to still get ready for dance class or go to school on good days. You taught them to have faith or see the silver lining. They got a lot of that from you.  She will go to kindergarten next year and feel, without a doubt, the same as everyone else. Her brain tumor is an afterthought, a footnote. Her bald head, last year in preschool, was nothing more than a hairstyle. Her AFO boot is simply a different shoe.

DS summer 20143
10616831_1468522173434935_2001963052_n r2 10693370_827061373992525_1393522306_n

We teach each other. I am strong because Reese is stronger. Her happiness reminds me that every day is a good day. She is happy because she knows she is loved.  I show her when I am happy. I show her when I am sad. I am open with my emotions because she knows how utterly and absolutely loved she is because I do. I don't ever want her to think as if I don't worry or fear for her. She deserves that... for me to be honest. She is always honest with me.

"I don't think I could be as strong as you..."

Maybe not. I hope you never have to find out.

reese's Facebook.

Monday, February 23, 2015

ice day number 1.

number 1 because there's another ice day/no school tomorrow.

oh yay. that was sarcasm, btw.

it is hard to be at home all day with not a lot of fresh air lol the kids are "go outside and play" kids. they like that. today was not a day like that. it was a "don't be TOO loud bc EJ is on calls in the office because he can't drive either, omg stop taking out so many things at one time, no don't eat that, didn't i say to clean this up, IT IS NAPTIME, omg why isn't she sleeping...." kind of day.

and another one tomorrow!!

we did paint. we did do a lot of laundry. some fell asleep on the floor. we ate good food. so it wasn't a total loss. just long. and tiring. and i need more wine ;)

chemo bumped to wednesday for weather. next week, then, we have an appointment/physical downtown in the early morning, then chemo, and then check in for MRI that is at 12:45. it'll be a good time to keep food away from her for that long. that was sarcasm, again, by the way.

I don't feel really blog'like today. lol not very chatty. so I'll let some photos that I haven't posted, recently.

(I do want to update on Aidan's dance comp this past weekend (pic below) - they had 3 dances and got 4th, 3rd, and 2nd place for them! :D way to go dancer strong!)

corbs sleep on floor1 sawyer house blade1 neighbor trampoline1 my bed black tank1 my bed black tank2 super reese1 aidan dance jump1 DS showbiz comp company1 Dallas photography mentor Lifestyle photography Amanda Skelte Gingersnap Photographs_0029 Dallas photography mentor Lifestyle photography Amanda Skelte Gingersnap Photographs_0030 Dallas photography mentor Lifestyle photography Amanda Skelte Gingersnap Photographs_0031 Dallas photography mentor Lifestyle photography Amanda Skelte Gingersnap Photographs_0032

I posted those last pics on my biz blog if you want to read my post on that.

praying for an awesome MRI. every day.

IG: punkfictionv4

Sunday, February 15, 2015

who i was that instant.

i don't know why i took this picture. or what makes me compelled to show it to you now. this was november 1, 2012, i believe. namely by the shirt. by the no make up. the way my hair looks. and when i look at the image order, it can't be any later than the 2nd. i wish i could see what time i took this. in the light of the ICU communal bathroom, it could be any time of day or night. no one up on C11 feels the need to care about time, though, really. it all just blends together in waves of tears or smiles.


reese has carried around our old iPhone3 for a while, but we haven't been able to charge it up since that was the reason i got a new phone the day after christmas 2012. but today, it charged. i had not really even thought about what was on it. sawyer said something about "which baby is this...?" when looking and i realized that there were images i never shared, don't remember. videos that instagram didn't have the capability of sending out to thousands of people, back then. videos that only i saw. or that EJ had sent me and i saved to my phone.

i don't really remember reese the way she looked in most of these photos. i don't really remember myself this way. part of those first 48 hours are etched into my brain vividly, but the other parts just weave through my memory like a cloud  sometimes heavy, sometimes light. i looked at the photos from september... october... reese younger than miller is now. so different. she had no words, really. a few, but nothing that stood out. maybe a phrase or two. she didn't look completely healthy, but not sick. sort of distant, i guess, in some photos. i saw photos in november of her head swelling up top, the a dozen neurosurgeons surrounding her bed, her own private entourage. i saw photos of being at home with her sisters in december 2012 - photos too blurry to post on IG, but still too amazing to delete. videos of sisters saying "hi" to reese and of stacking blocks on the floor.

more than two years later, it seems as if we are such different people, but we're not, really. each sister the same personality as they were. each relationship entwined together by a common string.

some days, i still feel like that girl in the photo above. i feel like I'm drowning in worry. like tears could wipe away my makeup of the day. so empty.

but that is not often. i am more often completely filled. yet there are times when bits and pieces of myself are torn away, some days, when i read about others' chemo not working, about sweet babies passing away after following for months or years.  in that instant, my heart could be ripped from my chest from sadness, from worry and fear.

reese's first vinblastine MRI is in about 2 weeks. march 3. which means for the next two weeks, ill think her shoe catching on the carpet means she can't walk well anymore. i'll think her dropping something means her bad arm isn't working. i'll be continually researching what the next thing may be - all the while, hoping that the next thing is just staying with what we are doing. and praying that it works. i want to hear the words "well, good news!" the second that the oncologist walks through the door into the treatment room - or when i pick up my cell later that day. whichever the case may be.

that photo was me for that second. i wanted to remember what grief looks like. what a mother who was only recently told "she has a brain tumor" looks like. but its amazing how it is not me 2 years later. different pieces make up the puzzle. different strings weave the days together.

this is me and reese now. i can't look at my life, daily, and not smile. i've always felt blessed. felt as if God has given me the world with my family, but that feeling compounds everyday. i pray my days are always filled with photos like this one.


IG: www.instagram.com/punkfictionv4