Sunday, October 18, 2015

24

hello my beautiful friends!

i have missed you. i wanted to say sorry for not writing for such a long time. life happened. that is the bottom line. best friends weddings + days with the littles filled my summer. we took our annual trip to sunset beach. which you all know is my favorite place in the whole history of the world. + for the most part summer was wonderful. then fall came and i got a job! teaching toddlers. which is pretty great. and i just got busy. oh. and i have a social life. you know. i like to see people. so the blogging just like got put on hold. sorry. 

but that isn't what this post is about. SHOCKER right?! ...so here it goes.

[ FIRST ACTUALLY I SHOULD SAY SOMETHING:: if you are new here. hello! welcome. i'm shelby. 5 feet of spunk trying to save the world. i have a white girl afro accidentally. i really love Jesus. i like to cook and sing and write and a whole lot more. i'm basically a mess of ideas a whole bunch of the time + i'm kind of annoying. but i'm totally okay with that. WELCOME! this is my blog. i don't like grammar. at all. so i don't use it properly. and if that bugs you i'm sorry. talk to my people if you must. but it won't ever change. okay nice to meet you. bye! ]

moving along...

i turned 24 this summer.

on july 18th to be exact. the best day of the whole year. obviously.

and you guys. 24 is weird. it just is. i feel old + young + just really confused about a whole lot.

in late august my moms crazy family came in for a family reunion. on friday afternoon we all went on a 7 mile kayaking trip. between the spurts of my uncles trying to LITERALLY kill me by shoving my kayak in the muck or making me run into a tree i had a ton of time to think + talk to God + just reflect.

the last year held many things. 23 was a hard year for me. beautiful in so many ways. but still very hard. many of you know i went through a bit of a funk + started seeing a counselor. apparently when you are in and out of the hospital your whole life + have doctor appointments instead of soccer practice it takes a toll on you. but you don't know until you are 23 and wake up one day in february and feel like you've actually gone insane. PHEW. so shout out to everyone who helped me through that. it was rough. but i've learned so much. and i grew in ways i never expected. and i'm still growing. because thats what happens in life. you grow.

[ the season has shifted and changed. and so i let go of what i am use to and walk bravely into the unknown because i know God is right beside me with each step. ] - a modern day ruth 

but i decided that i learned 4 big things before i turned 24. or. while i was 23. but i like the 4's together. so i went with that.

you all know how much i love lists.

so here we go...

1. what i have been through does not define me. but it has helped me become the young lady i am today. so it does matter.


2. it is okay to step away from friendships.

3. just because i'm a dreamer doesn't mean i can't be content with where i'm at.


4. don't get lost in your story. it isn't yours. it's His.



SO THIS IS WHERE I EXPLAIN ALL OF THESE.

IN CASE YOU DIDN'T SEE THAT COMING.

epiphany 1: what i have been through does not define me. but it has helped me become the young lady i am today. so it does matter.

what i mean:: it took me almost a quarter of my life to figure this out. but i believe i figured it out exactly when i was supposed to. you see people. let me explain. now trust me when i say i'm not trying to throw a pity party for myself right now. i promise. because i am well aware that people have gone through much more than me. i think it will just help paint a picture of what i am feeling. help you understand my epiphany.

here is my reality::

i'm 24.  the day i was born they told my parents to name me so i wouldn't die without a name. hydrops was the diagnosis. in fact. they gave them choices of what they could do with me since i wouldn't survive. really sad choices. but mama + daddy chose to try + save my life. i am so thankful for that. no one expected me to survive. except my mom. she knew i would. no one else. oh. God knew! He knew + my mama knew. and i think my daddy secretly knew too. but if you ask him if he thought i was going to die he will say yes. hahah. okay. moving on. so i spent the first two months of my life in the hospital. they told my parents i would be on oxygen for the rest of my life. need a feeding tube. they said i wouldn't ever walk or talk on my own. they thought i might have down syndrome. they said i would be blind and deaf. and so much more. they basically said i would have no quality of life. they were VERY wrong. i came home on september 18, 1991. after beating every odd.

since then i have spent many nights + days in the hospital or in a doctors offices.

grateful always to be alive. yet hopeful for a day of healing.

[this is what the Lord says: I have heard your prayers and I will heal you.] 2 kings 20:5

anyways...

i have had the following specialists in no particular order. cardiologist. ophthalmologist. nephrologist. neurologist. rheumatologist. hematologist. neurooncologist. endocrinologist. geneticist. allergist. occupationa/physical therapist. neurosurgeon. and a few more people that i just can't remember right now. oh! and the best pediatrician in all the land for 23 straight years. he retired last january. i am still in denial.

if you wanna read more about him:: click here ---> Dr. Johnson

i can't tell you the days of school that i missed. if i could even count them you'd think i was lying.

i have had 27 MRI's in the past 10 years. and a few before that.

because when i was 13...BOMB DROP...i was diagnosed with a brain tumor. okay soo...

5 eye operations. a few procedures here + there + a 22 hour brain surgery.

i had 4 years of growth hormones. 2 of which consisted of mama mixing the powdered chemicals with the liquid chemicals every night and drawing them out into a syringe + putting that into another syringe before sticking me with a needle that was...well...not small. then i got this cool pen contraption and could do it myself. and that became the normal. night time shots.

sing it with me... [ SHOTS SHOTS SHOTS SHOTS ]

my immune system basically hates itself and let me tell you. it is not fun. at all.

[i will NOT cause pain without allowing something new to be born-says the Lord.] - isaiah 66:9

oh! so since i was born with hydrops + have all these insane health problems there has to be a reason right? right! well when i was 10 years old we found out...

i have a genetic disorder called noonan syndrome. that no one else in my family has. i am just so lucky you guys. my ptpn11 gene mutated when i was growing in my mama's belly. about 1 in every 2,500 people get noonan syndome. and it is even rarer in girls.  because no one in my family has it mine is called a de novo mutation. fancy eh?

so all my health problems are categorized under this whole genetic thing. other than mr. brain tumor. he  is just an add on. i am the only person on record to have noonan syndome + an oligodendroglioma low grade neoplasm brain tumor.

i am literally just that cool.

SHOULDN'T I WIN SOME AWARD FOR THIS!?

[before I was born God chose me and called me by His marvelous grace.] - Galatians 1:15

anyways. if you had all of that wouldn't you be a bit confused too?

don't get me wrong. it was no ones fault. but i grew up in this world of needle sticks + nurses. mama + daddy did everything right. they did everything they were supposed to. in fact. i believe that the Lord picked them so perfectly for me - i couldn't have done it all without them. my mama is the greatest momologist in the whole history of the world.  she was a teacher for 35 years. but the lady is one amazing nurse. my daddy is a doctor. but definitely wasn't destined to be one of medicine. the guy is a fainter. but he has always put on his big boy pants + stayed right by my side. [actually he has slept through many a nights of me being sick. but i forgive him. the poor guy. he can't help it.]

[BUT THE LORD STOOD WITH ME AND STRENGTHENED ME!] - 2 Timothy 4:17

but you see - no one talks about the tough part. when you are all grown up + it hits you all of a sudden. it needs to be talked about. it just does.

because what happened is - the hospital + doctors offices started to feel like home. i felt like being the girl with the brain tumor was who i was meant to be. it was who i was. now don't hear me wrong on this. [holy crap i sound like my father. he says that all the time.] i'm not saying my identity wasn't being found in Christ. because it was. it is. i am His. i am saying that i felt like my brain tumor/other health problems defined me. that was not fun. i felt trapped. if i'm being brutally honest when we would pull into akron children's i felt like i could breathe again. how messed up is that? it was my real life you guys. it still kind of is. i'm working on it.

over the last year though. i have improved so much. learned SO SO SO MUCH. made lists and wrote pages + pages about who i want to be. what i want my identity to be found in. WHO i want my identity to be found in. there is still so much to learn. but i'm working every day. because my story matters. but it isn't all that i am. i am so much more than the girl with a brain tumor. but hear me when i say that i am grateful to have gone through what i have. because it is part of the story. part of His story. for my life. and if i hadn't been through any of it. i would probably be the most boring person in the whole history of the world. sitting and doing nothing with my life. i wouldn't be a writer. i wouldn't dream big. because life would have come easy. so thank goodness my immune system sucks. and thank goodness for the surgeries and sick days. because they have made me who i am.

and you know what? i can say this with complete confidence. i rather it be me than anyone else. i know it's been hard on the parents to watch. but holy freaking cannoli am i glad i didn't have to watch one of them or one of my siblings or friends walk this path. i know i can handle it. and i know WHO my strength is found in.

Jesus Christ brother!!!! the BIG JC. forever and always.

there have been many hard days. many where i begged him to take me Home. but i'm supposed to be here. and cling to Him in the meantime.

[but for me it is good to be near God. i have made the Lord God my refuge that i may tell of all your works.] - psalm 73:28

fun fact:: last year i joined a small group. i decided before i walked in the doors that i would never tell the group about my tumor. probably 60 people came and went throughout the year. about 30 of us were together every week. the whole year. a few people found out along the way. just because. you know. life. but not one time did i sit there + tell of my health problems. i didn't play the victim. i didn't announce that i have a brain tumor. it was so nice to just be shelby elyse taylor.

to just be me. because what i have been through does NOT define me. but it has made me the young lady i am today. so it DOES matter.

[ i praise You for i am FEARFULLY and WONDERFULLY made! ] - Psalm 139:14

[ you are worth more than MANY sparrows] - matthew 10:31

it has taken me 24 years to realize this. it was worth the wait.

p.s. - i have to admit that i do occasionally play what we in brain tumor world call "the brain tumor card." and you know what i'll never be sorry about it.

epiphany 2: it is okay to step away from friendships. 

what i mean:: heres the thing you guys. the spice girls straight up lied when they sang "friendships never end." on their 90's hit wannabe. because friendships do end. a lot. in fact. i think they end more than they don't.

i feel like blessed is such an overused word in the christian world but...i'm going to use it. get ready.

i have been truly blessed with amazing friends. i would say that my friends all fall into 3 categories. i have my best friends. there are about 5 of those. you know. the ones who aren't going anywhere. most of them have been in my life since kindergarten or before. then there are the good friends. there is probably about 10 of those. the ones i keep in touch with. but that aren't the bests. i still love them a whole lot. but they just aren't the best best ones. you know what i mean. and then thirdly there are just friends. or acquaintances. the ones i occasionally see to catch up with. the ones i care about still but don't see too often. but i know they have my back. they know i have theirs. end of story.

and then there is a 4th category...i like to call it the fading friends.

you know exactly what i mean. we have all had them. they are the ones that you used to be great friends with but over the years things have just changed. you have grown apart. your differences have become way more apparent. your similarities begin to fade.

all of a sudden you are sitting in a room with them feeling so uncomfortable because there is nothing to talk about. or you are sending them texts wishing and hoping they respond but they don't. and you have to face the reality that they never will. these aren't friendships where you see it coming either. they are the ones that you grip onto for dear life but after a long while you have to face the music. they don't care anymore. or you don't care anymore. and its just...

well its just over. and it is a freaking gigantic and hard pill to swallow. every time i think about it i just think of these dang vitamin c supplements my mom used to make me take when i was little. they literally seemed as big as a planet. and its like swallowing a handful of those at once. thats what fading friendships feel like. when you gotta come to grips with the reality of the situation. it sucks so bad. it does. but you have to step away. for your own sanity. or your heart will hurt forever.

[he who walks with the wise grows wise. but a companion of fools suffers harm.] - proverbs 13:20

in the past year i have had to do this a few times. yes. it is awful and heartbreaking. but it is so needed. sometimes you just need to step away. look at the situation from the outside. maybe this person was in your life for a short time to fulfill a specific purpose. they did that. and you don't need them anymore. or maybe you were in their life to help them through something. they got through it. and now they don't need you anymore. whatever it may be. it is going to be hard. some harder than others.

Proverbs 27:9 remind us of this [ a sweet friendship refreshes the soul. ] 

it is a verse i have clung to many times over the last year. often asking myself a few questions along the way. is this friendship healthy? is it good for my soul? is it sweet? and if the answers were no it was time to deal and walk away. because no one has time for that.


i think so often we live in this world of thinking we have to be people pleasers. don't step on anyones toes. be careful not to offend anyone. and i think that in friendships this happens a whole lot too. you don't want to lose them so you put up with a lot. or try to pretend the friendship isn't falling apart. but soon enough the inevitable will present itself. and you will have to walk away. don't be afraid dear people. it will be oh so good for your heart in the end.

it is hard. it is sad. and it is brutal. most times anyways. but you know its the right thing.




a few weeks back a singer named jamie grace put this video on youtube. it was like she took the words right out of my brain and put it into a video. some parts beautiful. some parts heartbreaking. she is my soul sister. i'd like to think we are friends because we follow one another on Twitter + her music speaks to my soul. watch the video. it helped me realize even more my second epiphany...

[ IF YOU ARE ON YOUR PHONE YOU WONT SEE THE VIDEO....so here is the link homies.]

https://www.youtube.com/watch?v=nJjQMB9whM4

cheers to you Jamie Grace. you are gold.

sooo...

it is okay to step away from friendships.

trust me.

epiphany 3: just because i'm a dreamer doesn't mean i can't be content with where i'm at.

i have always been a dreamer. a big one. nothing wrong with that. the problem is i don't follow through on them. i'm always wishing for the next great thing.

when i was little i was sure i would be on food network one day. one time in 7th grade i wrote a poem about how all i wanted to do was meet oprah.

most of my childhood i was sure that if the actress who played ruthie on 7th heaven ever quit i could be her in an instant.

i always dreamed of being athletic so i could run track like my big sister. or play soccer like my big brother. waiting for heaven for those. literally though.

i've dreamed of moving to LA or NYC. i wanted to open a bakery. and a flower shop. and i was convinced that somehow i'd be on the ellen show one day.

i just wanna do big things.

[ delight yourself in the LORD and He will give you the desires of your heart.] - psalm 37:4

i was convinced for roughly 4 years that i was going to marry a guy named Graham Bunn who was on the bachelor and really loves Jesus. but its not in the cards...

i always have wanted to do something crazy like...

be on the amazing race. or survivor.

and as a kid i was SURE i was going to have a disney channel show one day.

i want to...

be the next julia child

go to every continent.

release an album of all the songs i've written

[mostly about all the boys who never liked me back.] #watchyoselfhomies

open an orphanage.

adopt 5 kids.

or maybe have a few and adopt a few.

currently i'm writing a book with dreams of it being a new york times best seller.

and i'm pretty sure the Lord wants me to become a motivational speaker after the book comes out.

I'M DEAD SERIOUS.

after that i want to start a foundation. the brave foundation.

but i also want to be a child life specialist.

and i also want to be a wife and a mom.

and a superhero.

i just want to help people and do great things.

[i can do ALL things through Christ who strengthens me.] - philippians 4:13

[rise up-take courage and do it.] - ezra10:4

but right now ... right now i'm still living with my mama + daddy.

right now i'm teaching toddlers + loving it.

right now i'm thankful to have beautiful friends near and far. who support me in the now.

right now i'm single.

right now i'm living and loving and learning.

[I came so that you may have LIFE and live it abundantly.] - john 10:10

in the now.

and i have to be okay with all of this.

because HE has a plan.

one that would surely scare me to death if revealed too soon.

so i hold tight to my epiphany. even as delightful as my dreams may seem.

living purely is okay for now.

[be truly glad. there is wonderful JOY ahead.] - 1 peter 1:6

[perhaps this is the moment for which you were created.] - esther 4:14

epiphany 4: don't get lost in your story. it isn't yours. it is His. 

i'm honestly not even sure how i can elaborate on this one you guys.


it is just so simple.

it isn't about me

it isn't about me
it isn't about me
it isn't about me
it isn't about me

IT ISNT ABOUT ME!!!!!

[He must become greater. i must become less.] - john 3:30

something that isn't always so easy to understand.

because you see people. my life has presented so many opportunities for the world to revolve...well...around me. we have pictures of me wearing a crown that reads "little empress" my dad's friends started calling me "the little general" when i was a little kid. i could go on.

picture this. we have an old video my dad took. my mama + i are standing in a beach house. i'm wearing a dress with ducklings on it with my head full of curls. i am probably about 3. dad asks me "whose the most special girl in the whole world!?" and without missing a beat i jump in the air and scream "ME!!!!!"

i didn't give it a second thought. because they had told me over and over again how special i was.

and i gotta be real with you. i still have that 3 year old mentality on so many days. thinking because of what my life has looked like i am some kind of amazing human. but i'm not. and somedays it hits me so hard that i am just kind of ordinary. but i don't think i'm that either. i'm just very unique. but sometimes i get wrapped up in it.

like for instance ... last year i took a personality test and before it started my friend was like "whats your worst trait its going to find?" and i'm like "oh i like to be the center of attention."

because its true! AND THE FREAKIN MYERS BRIGGS LITERALLY SAID IT.

hahahah what is life.

okay back to reality.

i guess what i'm trying to say is this...

i've been through some crap. and also had a wonderful life. and it is so easy to pretend that this life i have lived has been filled with magical moments because of how great i am. or be confused and think i did something wrong to deserve to have a million things wrong with my body. but none of it is true. 

this story i have gotten to live out has nothing to do with me. and everything to do with my Jesus. 

it is a story about His love for a little girl. His plan for her life + His grace His Mercy + His faithfulness. it is all about HIM. 

[ blessed is she who has believed that the Lord would fulfill His promises to her.] - luke 1:45

in the chaos of all that has happened the past 24 years. one thing remains true. my relationship with Jesus is the greatest thing to have ever happened to me. 

and this story He has written for me is the greatest one i could ever imagine. i wouldn't change a thing. 

[for we are God's masterpiece. He has created us anew in Christ Jesus. so we can do the good things He planned for us long ago.] - ephesians 2:10

and so i hold tight to this final epiphany. don't get lost in your story. it isn't yours. it is HIS!

i hope you hold tight to that as well...

well. 

thats what i learned the past year. well. the year before i was 24. 

remember this my people::

what you have been through does not define you. but it has helped shape you. so it DOES matter.

it is okay to step away from friendships.


you can be a dreamer and be content with where you are at


your story isn't yours. it is His.


thanks for reading my ramblings.

LOVE YOU more than 300000 gluten free waffles with chocolate chips....maybe.

thanks for loving me. thanks for praying for me. thanks for accepting...me

YOU are BEAUTIFUL. 

never forget that.

BLESSED by a heavenly Daddy 

Shelby Elyse Taylor