her faith changed me. her faith inspired me. i can't wait to meet her one day in Glory. i have a feeling we will be bffe's. [best friends for eternity.]
i feel like sometimes i become a broken record here. talking about my trials. but i also feel that with each year comes new challenges - or new things i've overcome. similarly - as each year passes my brain becomes more able to understand what has actually happened. and i've had to unpack it all while trying to keep it together + live life like a "normal" girl. so i apologize if you are tired of reading about it. but honestly - it won't stop anytime soon. so i guess if it tires you out - don't read my blog? i don't say that to sound rude - it's just my honest advice. my trials have made me who i am - this journey has helped me discover who God wants me to be.
i can't change that. i refuse to try.
i can't change that. i refuse to try.
this year. my faith has been tested. in ways like never before. this year has been tough. i have felt lonely often + wished i could be more brave. i tell people all the time that i would rather be physically ill than struggle mentally and in my spirit. there is a certain kind of control i feel when my it's my body. but when it's my mind and spirit - it often feels out of control. so all of this "new" that has flourished the past year or so has been hard.
but i will scream it from the mountain tops until the day i die.
even when i'm doubtful. my Jesus is SO faithful!
you hear me?
EVEN WHEN I'M DOUBTFUL - MY JESUS IS SO FAITHFUL.
the action from this young woman in the bible has always encouraged me. but what has been more special is what Jesus replies with.
[ DAUGHTER, your faith has healed you. go in peace. ]
it gets me everytime! Jesus didn't even touch her + she was healed. for just BELIEVING.
[[ you guys. i love it so much so that i got "daughter, your faith has healed you" tattooed on my arm last march. on the 12 year anniversary of my brain surgery. in my mom + dad's handwriting ... because obviously that was the only way they'd agree to it. hahaha. God Bless RT + LT for putting up with me. and letting me be my wild and free self all the time. ]]
anyways ... now - i know to some this is a sticky subject. it is for myself as well. for many years of my life i was pelted with the lies of "well if you have enough faith you won't be sick anymore." or "if you really had Jesus in your heart and were walking with the Lord like you say you are, you wouldn't be sick at all."
i beg to differ bro. because i love me some Jesus. and my immune system still doesn't love me.
but everything i have been through is so much greater than i think i even know now. there is an incredible purpose in store. and i think the older i get - the more aware of that truth i become.
i've said it before + i'll say it till my lungs give out - my complete healing may not come on this earth. it may come in heaven. but the healing will still come. i am sure of that. it's promised.
most days i long for the wholeness that heaven will bring. because if i'm being real with you - most days my body aches + i don't feel 100% ... but who wants to be the girl that is constantly whining about not having a perfect body? not me. that's for sure. so i just keep on trucking. because i know one day - my body will be perfect + whole + i won't even remember what this earthly one was like.
last month i spent a week in ohio. i flew home to stand beside one of my best friends as she married the man that God designed just for her.
since i knew i'd be home anyways - i scheduled my MRI + neurooncology appointment for that week.
i'm not sure if it was the fact that my alaska life is just busy ... or if it was really a total peace from God but in the weeks leading up to my MRI i wasn't a trainwreck like i normally am before a scan. i didn't have a ton of scanxiety + i didn't feel like i was going to burst into tears every moment of every day.
my mama and i made our way to cleveland clinic on a tuesday + can i just say that i will never forget that day.
the beginning of my appointment didn't go well. 3 of my veins blew just trying to get my IV placed + then they just kept bleeding and bleeding. they had to change my bandaids and gauze before i was even walked back to my MRI.
and my brain is so messed up that i sat there and thought to myself "great. i can't stop bleeding. i definitely have cancer. i have leukemia. i'm sure. can't wait to find out in an hour."
also:: i'm not a complete psycho - i grew up around oncology. i know a lot. i also am covered in bruises + noonan syndrome can have a predisposition to some kinds of leukemia - so i'm not a psycho but...
I AM A MESS. FIX IT LORD!
well. i slept through most of my scan. but at first i thought i was having some kind of issue because i SWORE that a woman put me in the scan. and then it was a mans voice the whole time coming through the speakers. when he walked in i was like "phew you are a guy!!!" and he's like "haha yes sorry we tricked you!"
anyways - after my scan we made our way to the pediatric oncology/hemotology office.
they took my vitals - and as always - they measured me - which i find to be absolutely hilarious. because i'm 26. like ... do normal 26 year olds grow? hahah.
within a few minutes my amazing doctor entered the room. she sat down. pulled up my scans + her next words were a blessing straight from heaven.
she said "theres no growth. everything looks stable. if your tumor were to ever grow again, it would be absolutely remarkable. in a bad way - but still remarkable. i feel comfortable having no scan next year. how does that make you feel?"
and holy smokes i wasn't sure if i should burst into tears or dance with my mama.
i said "thats awesome...but it gives me a little anxiety."
she said that pediatric neurooncology is kinda like the hotel california ... once you are there you never leave. HAHA! so she said i could come back and see her in a year + we could just make sure i'm doing well + not having any symptoms. that made me feel better.
SHE ALSO SAID THIS:: that the parts of my brain they entered into to get to my tumor were totally healed + you couldn't even see where i had surgery.
at that point ... i almost totally lost my mind.
WHAT IS THIS LIFE!?
so the rest of the appointment we just talked about our lives. i filled her in on alaska + she told me about her kids. and then we went to leave...
so i gave dr. tekautz a big hug + she whispered in my ear "don't be afraid + don't take crap from anyone. if you are ever in ohio and need a nanny job - call me!" haha! she's the bomb.
minutes later me and my mama busted outta that place singing songs of praise + basically danced to the car.
we met my friend rachel so i could help her run some pre-wedding errands that day + she celebrated with me + i told her "this is awesome but also real scary." she helped me see the bright side of things but also didn't diminish my feelings. i love rach for that. she's so good at that. it's a beautiful quality.
that day + the days following, i just kept thinking ... when something is such a big part of your life + then all of a sudden it's not - it's weird.
like ... i've had over 30 MRI's in the last 12.5 years and then all of a sudden they say i don't need them anymore. ever. again.
and i'm supposed to just be like "okay. it's all good. i'll just forget i have a tumor in my brain."
that isn't realistic though you guys. i can't forget.
but that day the texts POURED in. everyone was so excited!
dad said "well you are just realizing what i've always known." ... his version of "your dad was in denial the past 12.5 years." hahaha. i love you papa.
my dear friend nina texted me and reminded me of my tattoo. she was like "shelbs maybe God is trying to tell you "daughter, your faith has healed you." it made me all teary eyed + then i said "maybe but it would be easier if it was just gone!" couldn't be truer! hahaha we laughed.
in all honesty - i'm still struggling with this. don't get me wrong. i'm thrilled. so grateful. but something about it is scary. everyone i've talked to that has experienced anything similar says these feelings are totally normal. i think normal is relative. but whatever i'm feeling is bizarre.
i told mom and dad that i think i want to have a scan in 5 years. just for my own sanity. and then after that maybe never again. whats scary for me is i don't remember what i felt like in the days leading up to my diagnosis. all i know is what mom and dad have told me. so it's not like i can be like "oh yeah this means my brain tumor is growing." so when i think of having a check up at the 5 year mark it leaves me with a little extra peace.
i still wake most mornings with that tiny part of my brain that goes "you could explode like a grenade you know?" and i'm like "NO! my neurooncologist said that would be remarkable." and my brain is like "but it would happen to you - everything about you is a mystery." and i'm like "SHUT UP BRAIN! i have a grand life to live!"
SO I'M SCARED! BUT YOU GUYS! I CANT HELP IT! IM TRYING!! #hotmessexpress
hahah. man. sometimes when i type things like this i feel like i'm actually insane. maybe i am.
at church recently we sang one of my favorite kari jobe songs called miracles. and as i stood there - worshipping in the 4th row my eyes welled up with tears + i almost had to sit down. because it was like Jesus was standing there - holding me + saying "DAUGHTER! don't you see me moving? don't you see that i'm the God of miracles? believe it shelby elyse!"
you know the feeling you have on christmas eve? where you are tucked back in your childhood bed and you can barely sleep because you know the morning will be so special? it will be filled with music + coffee + all your favorite people wrapped in blankets in the living room unwrapping packages that express your love? and you feel like you might actually burst!? and you want to sleep because you want the morning to come - but you also want to stay awake because you want to remember the moments?
that's kinda how i feel about being healed. i want it to come. i truly do. but there are pieces of me that don't want it to. don't take this the wrong way people. i don't want to be sick. i don't want to have a brain tumor or a genetic disorder. but i think that if they all went away i would forget who i was without them. just like i want to fall asleep on christmas eve for the morning to come. i long to be healed because i want a new body. and just as i want to stay awake to remember the moments - i want a part of me to not be healed because i want to remember who Jesus wants me to be IN this.
so maybe for now. i stay in the space of drifting in and out of sleep on christmas eve. maybe for now i'm okay with still having a brain tumor and not needing scans. maybe for now i'm okay with still having a genetic disorder and having issues because of it - but i stay thankful for the things we have under control + the small things that have gone away. maybe for now i'm okay with my days being filled with aches + feeling yucky - but i stay thankful for the good days when nothing hurts + i feel like i am wonder woman.
because one day ... one day it'll be like christmas morning.
because one day ... one day i will stand before my FATHER + He will look into my eyes + say "DAUGHTER! your faith has healed you!"
and i hope that young woman is waiting beside him. and i hope she can take me hand and show me around. and i hope she can get a glimpse into my story + i can hear all of hers. and i hope that Jesus will sit with us both + i hope that He will tell me what i have always known.
that her pain - that beautiful young woman's pain - meant something because it helped me. and that my pain. it means something. because it is going to help someone.
and that her healing - her precious and miraculous healing - meant something because it helped me. and that my healing - it will mean something. large or small. because it is going to help someone.
but i will scream it from the mountain tops until the day i die.
even when i'm doubtful. my Jesus is SO faithful!
you hear me?
EVEN WHEN I'M DOUBTFUL - MY JESUS IS SO FAITHFUL.
the action from this young woman in the bible has always encouraged me. but what has been more special is what Jesus replies with.
[ DAUGHTER, your faith has healed you. go in peace. ]
it gets me everytime! Jesus didn't even touch her + she was healed. for just BELIEVING.
[[ you guys. i love it so much so that i got "daughter, your faith has healed you" tattooed on my arm last march. on the 12 year anniversary of my brain surgery. in my mom + dad's handwriting ... because obviously that was the only way they'd agree to it. hahaha. God Bless RT + LT for putting up with me. and letting me be my wild and free self all the time. ]]
anyways ... now - i know to some this is a sticky subject. it is for myself as well. for many years of my life i was pelted with the lies of "well if you have enough faith you won't be sick anymore." or "if you really had Jesus in your heart and were walking with the Lord like you say you are, you wouldn't be sick at all."
i beg to differ bro. because i love me some Jesus. and my immune system still doesn't love me.
but everything i have been through is so much greater than i think i even know now. there is an incredible purpose in store. and i think the older i get - the more aware of that truth i become.
i've said it before + i'll say it till my lungs give out - my complete healing may not come on this earth. it may come in heaven. but the healing will still come. i am sure of that. it's promised.
most days i long for the wholeness that heaven will bring. because if i'm being real with you - most days my body aches + i don't feel 100% ... but who wants to be the girl that is constantly whining about not having a perfect body? not me. that's for sure. so i just keep on trucking. because i know one day - my body will be perfect + whole + i won't even remember what this earthly one was like.
last month i spent a week in ohio. i flew home to stand beside one of my best friends as she married the man that God designed just for her.
since i knew i'd be home anyways - i scheduled my MRI + neurooncology appointment for that week.
i'm not sure if it was the fact that my alaska life is just busy ... or if it was really a total peace from God but in the weeks leading up to my MRI i wasn't a trainwreck like i normally am before a scan. i didn't have a ton of scanxiety + i didn't feel like i was going to burst into tears every moment of every day.
my mama and i made our way to cleveland clinic on a tuesday + can i just say that i will never forget that day.
the beginning of my appointment didn't go well. 3 of my veins blew just trying to get my IV placed + then they just kept bleeding and bleeding. they had to change my bandaids and gauze before i was even walked back to my MRI.
and my brain is so messed up that i sat there and thought to myself "great. i can't stop bleeding. i definitely have cancer. i have leukemia. i'm sure. can't wait to find out in an hour."
also:: i'm not a complete psycho - i grew up around oncology. i know a lot. i also am covered in bruises + noonan syndrome can have a predisposition to some kinds of leukemia - so i'm not a psycho but...
I AM A MESS. FIX IT LORD!
well. i slept through most of my scan. but at first i thought i was having some kind of issue because i SWORE that a woman put me in the scan. and then it was a mans voice the whole time coming through the speakers. when he walked in i was like "phew you are a guy!!!" and he's like "haha yes sorry we tricked you!"
anyways - after my scan we made our way to the pediatric oncology/hemotology office.
they took my vitals - and as always - they measured me - which i find to be absolutely hilarious. because i'm 26. like ... do normal 26 year olds grow? hahah.
within a few minutes my amazing doctor entered the room. she sat down. pulled up my scans + her next words were a blessing straight from heaven.
she said "theres no growth. everything looks stable. if your tumor were to ever grow again, it would be absolutely remarkable. in a bad way - but still remarkable. i feel comfortable having no scan next year. how does that make you feel?"
and holy smokes i wasn't sure if i should burst into tears or dance with my mama.
i said "thats awesome...but it gives me a little anxiety."
she said that pediatric neurooncology is kinda like the hotel california ... once you are there you never leave. HAHA! so she said i could come back and see her in a year + we could just make sure i'm doing well + not having any symptoms. that made me feel better.
SHE ALSO SAID THIS:: that the parts of my brain they entered into to get to my tumor were totally healed + you couldn't even see where i had surgery.
at that point ... i almost totally lost my mind.
WHAT IS THIS LIFE!?
so the rest of the appointment we just talked about our lives. i filled her in on alaska + she told me about her kids. and then we went to leave...
so i gave dr. tekautz a big hug + she whispered in my ear "don't be afraid + don't take crap from anyone. if you are ever in ohio and need a nanny job - call me!" haha! she's the bomb.
minutes later me and my mama busted outta that place singing songs of praise + basically danced to the car.
we met my friend rachel so i could help her run some pre-wedding errands that day + she celebrated with me + i told her "this is awesome but also real scary." she helped me see the bright side of things but also didn't diminish my feelings. i love rach for that. she's so good at that. it's a beautiful quality.
that day + the days following, i just kept thinking ... when something is such a big part of your life + then all of a sudden it's not - it's weird.
like ... i've had over 30 MRI's in the last 12.5 years and then all of a sudden they say i don't need them anymore. ever. again.
and i'm supposed to just be like "okay. it's all good. i'll just forget i have a tumor in my brain."
that isn't realistic though you guys. i can't forget.
but that day the texts POURED in. everyone was so excited!
dad said "well you are just realizing what i've always known." ... his version of "your dad was in denial the past 12.5 years." hahaha. i love you papa.
my dear friend nina texted me and reminded me of my tattoo. she was like "shelbs maybe God is trying to tell you "daughter, your faith has healed you." it made me all teary eyed + then i said "maybe but it would be easier if it was just gone!" couldn't be truer! hahaha we laughed.
in all honesty - i'm still struggling with this. don't get me wrong. i'm thrilled. so grateful. but something about it is scary. everyone i've talked to that has experienced anything similar says these feelings are totally normal. i think normal is relative. but whatever i'm feeling is bizarre.
i told mom and dad that i think i want to have a scan in 5 years. just for my own sanity. and then after that maybe never again. whats scary for me is i don't remember what i felt like in the days leading up to my diagnosis. all i know is what mom and dad have told me. so it's not like i can be like "oh yeah this means my brain tumor is growing." so when i think of having a check up at the 5 year mark it leaves me with a little extra peace.
i still wake most mornings with that tiny part of my brain that goes "you could explode like a grenade you know?" and i'm like "NO! my neurooncologist said that would be remarkable." and my brain is like "but it would happen to you - everything about you is a mystery." and i'm like "SHUT UP BRAIN! i have a grand life to live!"
SO I'M SCARED! BUT YOU GUYS! I CANT HELP IT! IM TRYING!! #hotmessexpress
hahah. man. sometimes when i type things like this i feel like i'm actually insane. maybe i am.
at church recently we sang one of my favorite kari jobe songs called miracles. and as i stood there - worshipping in the 4th row my eyes welled up with tears + i almost had to sit down. because it was like Jesus was standing there - holding me + saying "DAUGHTER! don't you see me moving? don't you see that i'm the God of miracles? believe it shelby elyse!"
you know the feeling you have on christmas eve? where you are tucked back in your childhood bed and you can barely sleep because you know the morning will be so special? it will be filled with music + coffee + all your favorite people wrapped in blankets in the living room unwrapping packages that express your love? and you feel like you might actually burst!? and you want to sleep because you want the morning to come - but you also want to stay awake because you want to remember the moments?
that's kinda how i feel about being healed. i want it to come. i truly do. but there are pieces of me that don't want it to. don't take this the wrong way people. i don't want to be sick. i don't want to have a brain tumor or a genetic disorder. but i think that if they all went away i would forget who i was without them. just like i want to fall asleep on christmas eve for the morning to come. i long to be healed because i want a new body. and just as i want to stay awake to remember the moments - i want a part of me to not be healed because i want to remember who Jesus wants me to be IN this.
so maybe for now. i stay in the space of drifting in and out of sleep on christmas eve. maybe for now i'm okay with still having a brain tumor and not needing scans. maybe for now i'm okay with still having a genetic disorder and having issues because of it - but i stay thankful for the things we have under control + the small things that have gone away. maybe for now i'm okay with my days being filled with aches + feeling yucky - but i stay thankful for the good days when nothing hurts + i feel like i am wonder woman.
because one day ... one day it'll be like christmas morning.
because one day ... one day i will stand before my FATHER + He will look into my eyes + say "DAUGHTER! your faith has healed you!"
and i hope that young woman is waiting beside him. and i hope she can take me hand and show me around. and i hope she can get a glimpse into my story + i can hear all of hers. and i hope that Jesus will sit with us both + i hope that He will tell me what i have always known.
that her pain - that beautiful young woman's pain - meant something because it helped me. and that my pain. it means something. because it is going to help someone.
and that her healing - her precious and miraculous healing - meant something because it helped me. and that my healing - it will mean something. large or small. because it is going to help someone.
[ the One who made the blind to see. is moving here in front of me. moving here in front of me. the One who made the deaf to hear. is silencing my every fear. silencing my every fear. i believe in You. i believe in You. You're the God of miracles. the one who does impossible is reaching out to make me whole. reaching out to make me whole. the one who put death in it's place. His life is flowing through my veins. life is flowing through my veins. i believe in you. i believe in you. You're the God of miracles. i believe in You. i believe in You. You're the God of miracles. the God who was and is to come. the power of the risen One. the God who brings the dead to life. You're the God of miracles. i believe in You! i believe in You! You're the God of miracles! ]
be brave
shelby elyse