{lately.}

^^ morning bible reading.

sutton sound "his verse" and

this one from psalm was so

fitting for what was ahead of

us that day.

willows butterflies came out of their

cocoons! it was fascinating to see

the whole process! i'm just proud

(& shocked) that they are alive!

^^ brave daddy and willow heading in to the neurosurgeons office.

we were all a little sick to our stomachs but we made a great team. ;)

she listened against the door and then ran when she thought she heard someone coming in. she was HILARIOUS during the appt.

as soon as the nurse practitioner

came in she says, "you GOTTA

smell my daddy's hand!".

what the heck??

she was super proud of her bracelet and so excited to pick out a toy after

she was done. she picked

a thor action figure. :)

^^ that afternoon a HUGE box was

on our doorstep.

my friend lauren that lives too

far away in pensacola had sent

a box full of

willows favorite things and i

cried and cried at the way

my girl was loved.

willow said "momma you sure are making a lot of happy tears!".

it was such perfect timing and

so unexpected.

thank you, toooooooo!!!

(what we call eachother. haha.)

sutton even got some happies that

he LOVES!

^^ beautiful afternoon in the backyard.

i moved their thomas roller coaster

outside so they could keep going down

the hill. they had so much fun

and of course sutton had to make it

more exciting by going backwards. ha!

^^ since sutton goes to bed so early,

just willow and I had a little supper date

and then went to see children of the world choir perform.

it was so so so good.

while they were singing,

willow whispered to me that her job when she grows up is to

find mommys and daddys

for kids that don't have any.

geeeeeeez.

it was so neat afterwards because she got to interact with the kids and it really

connected with her that there are REAL

kids her age that don't have what a lot

of kids have. it really stirred

something in her heart and she's been

talking about ways she can help make

a big difference. :)

^^ she loves pushing her babies

in the little carts. and i only

got the skin ripped from the back of my

ankles once. ha!

i showed sutton his lovie from the nicu

and showed him how i put it in my shirt so he could snuggle with it and smell momma and he played with it in his

shirt for the rest of the day. :)

her neck/head/legs have been hurting her a good bit so massages happen

a lot and seem to really help.

i sent this pic of sutton and i to nana and she asked if my pain was bad because she could see it in my eyes.

it meant so much to me that my momma

knows me and can see past a smile. :)

sutton looooves to sing (willow too) and we took turns performing on stage.

he really is good!

^^ willow reading to sutton. she only skipped 10 pages. ;)

but seriously. how do i stop?

truth. some days. haha.

my friend leigh came to help me bake and cut out 500+ tiny cookies to put on

top of the february cuppycakes!

i'm so excited!

twinning with my girl. :)

"i know what i'm doing."

it blows my mind that i'm 

sitting down to write *this* post. 

but today it's cold and rainy 

and there's just no excuse because 

i'm warm and snuggled up 

on the couch with my bible in my lap, sutton is taking a solid nap 

and willow is playing in her room 

for "quiet time". 

(yes, there are dishes to be done but whatever.)

so, a few weeks ago 

we had an appointment with 

a pediatric neurologist for willow. 

she's had headaches off and on 

for a couple of years but recently 

has developed what she's describes 

as "tickling and beating" in her legs 

and feet. her physical neurological 

exam looked great but because 

of my history, her doctor ordered 

an mri just to be safe and to 

put our minds at ease. 

she was a CHAMP during the mri. 

we talked about it a lot starting 

the day before and she chose to have anesthesia which i was glad for. 

those machines are tiny, loud and 

scary even for a grown up! 

i got to hold her hand while they 

gave her gas and she fell asleep. 

the iv was after she was out thank goodness. she was so happy 

when she woke up and the nurses 

didn't want her to leave because 

she was so sweet and funny. #duh

i was supposed to call for the 

results two days later but we were 

having a MUCH needed family day 

and i really just wanted to be with my people and in the moment. 

we were at willows favorite place ever, chuck.e.cheese and my phone rang. 

i'm not even sure why i answered 

but i did and it was a nurse from the neurologists office. she said 

"the doctor reviewed the mri and 

willow does have chiari." 

i'm shaking and crying just typing this. 

i couldn't believe it. i had such a 

peace that her scans would be totally normal and i was absolutely shocked. she went on to say that her 

malformation was 1.8 cm 

(most adults are dealing with mm's) 

and that a pediatric neurosurgeons office would be calling to schedule an appointment. i hung up, found william and just started sobbing while he 

hugged me. he had no idea who 

i'd been talking to but i said "she has it" and he knew. right there in the 

middle of chuck.e.cheese, we were experiencing one of the 

worst moments we could imagine. 

we decided not to tell willow until 

our emotions had calmed down 

because we absolutely didn't want 

her to have any unnecessary fear. 

the next 5 days, i set my alarm 

for 3am so i could get up and 

get my tears out before she woke up 

and as soon as the house was quiet 

at night, i'd sit on the couch 

with my bible and a pen and cry 

and read and pray and write down notes. 

the neurosurgeons office did call and when they asked when we wanted 

to come in i said "umm never". 

she was so sweet and said 

"oh honey i know". but we go 

in on february 3rd and we'll know 

a lot more then. 

some things we DO know now. 

1) God knitted this little girl together perfectly. she is such a LIGHT and i 

can't think of anyone that will handle 

this better and still praise God 

through it than willow. and clearly 

God knows that too. 

"and I will be to her a wall of fire all around, declares the Lord, 

and I will be the glory in her midst."

zechariah 2:5

2) we didn't cause this. 

i got pregnant with willow on our 

first date and we've experienced 

a lot of guilt because of it but also a whole lot of grace and redemption. 

we know without a doubt that we 

aren't being punished because of choices we made. that's not how 

our God is. His heart breaks with ours. 

"those who look to Him are radiant, 

and their faces shall never be ashamed."

psalm 34:5

3) we are still devastated. 

my journey with chiari has been long 

and excruciating. i wouldn't wish a minute of this pain on anyone. 

but this makes it all worth it. 

i know exactly how she may feel and 

i'll know exactly how to help her. 

i can be her biggest advocate because often times due to how rare this 

condition is, the patient knows more about it than the doctor. 

i've had several doctors tell me that it was basically a small part of a 

chapter in a big book. obviously understandable. there is now a research center dedicated to chiari and doctors and scientists and other experts 

focusing 100% of their time to finding hope for "chiarians". so there is hope 

that in her lifetime, there will be not 

a cure but relief. 

4) i grew up in a strong kjv household 

but i've learned to grab my "message" bible when i'm emotionally distraught 

and can't use extra energy figuring 

out words. one of the nights, i was flipping through jeremiah 

(i call it suttons chapter. ;) *his* verses 

are jeremiah 1:7-8) and i really loved this version of a favorite. "I know what I'm doing. I have it all planned out - 

plans to take care of you, not abandon you, plans to give you the future you hope for. when you call on me, 

when you come and pray to me, I'll listen. when you come looking for me, you'll find Me." this was such a confident promise for us to be reassured of. He knows 

what He's doing. and that's enough for us. when i first started looking into her future, i saw all the things she loves 

that she won't be able to do anymore (roller coasters, riding horses, 

jumping on trampolines, etc.) but God says to keep our focus on HIM. He knows what He's doing. 

He knows what He's doing. 

5) because of my experience, 

we know to only let someone do 

surgery that specializes in this particular condition. it's more expensive of course but it's well worth it to avoid 

unnecessary pain and additional procedures. the best of the best 

is a neurosurgeon in new york city. 

we have no plans as of right now but 

we will have a better idea of a timeline after we see the images and talk with 

the doctors here. 

this past weekend, w was out of 

town hunting and willow and i had a chance to talk. we decided that if 

she ever asked us specific questions, 

we would be honest with her 

(appropriate to her age) so that she would trust us without hesitation 

in the future. i was rubbing some essential oils on her and she asked 

why i was rubbing it on that spot in particular (the back of her head and neck). so i told her that her mri 

pictures showed that her brain was 

just like mommas! God made her and daddy alike on the outside and her and momma alike on the inside! she's pretty excited about that. and she's excited 

to see "the squiggly parts" of her brain 

at our next appointment. it couldn't have gone better and it was such a sweet 

gift from the Lord. she's doesn't know any *bad* about it and we plan to keep 

it that way as long as possible. 

(this was right after we talked. she was singing and dancing a song about chiari.)

so now we wait and pray and trust 

and love on our little miracles. 

william is continuing to be an amazing provider and THRIVING in our new location (we all are!) and i'm upping 

my cuppycake game to help financially 

as much as i can. my plan is to do a 

big order once a month. 

it is SUCH a blessing to me and a 

huge opportunity to intentionally look beyond our circumstances and 

pray for each name as i bake. 

please pray WITH us as we start 

this long journey. we are honestly 

still pretty shocked and devastated 

but our legs are back under us now 

and we're ready to fight away the 

enemy as he tries to throw fear and 

lies at us. we are so thankful to 

have you and to share our little angels miracle with you. 

day in the life.

these are quite possibly the most

boring posts for anyone to read 

but they're my very favorite posts

to look back on and remember. :)

so here is a day in our life 

this past friday. 

willow got to sleep with me 

since w was working late in the garage. 

and she really wanted to sleep with

our kitty cat and the kitty loves to 

sleep with me. 

did i mention we got a kitten?!

we totally did and it's been the

best thing ever. 

willow named her sarah. 

everything has been named sarah

since she could talk. ;)

ANYWAY. 

this little stinker (sarah) woke us up

wayyy too early. 

like in the 5 o'clock hour. 

we stayed snuggled in bed

until sutton woke up 

closer to 7. 

they both ate bars for breakfast. 

and i had a glorious spark. 

moved back into suttons 

big cozy chair, turned on some music (almost always bethel music) and watched

this little monkey climb and pick out

the toys he wanted. 

(the shelves are "organized" by age so 

the baby toys are on the bottom self.)

daddy came in to do his rumble roller

(he practices what he preaches at work!) and we read our little family devotions. 

we love the Jesus Calling for kids

and then the regular Jesus Calling. 

i shower at night but 

almost always do an epsom salt

soak for my neck. 

we've been loving these dr. teal's

soaks!

dried my hair and did

my face painting quick. ;)

and then gave sutt a haircut

while i had w to help hold his arms down. 

helped willow get dressed

and then she brushed (& brushed)

her teeth. 

she's very serious about teeth brushing 

and has to make sure they "sparkle". 

i started drinking this tea a while ago,

and i LOVE it. 

it's sort of a hassle but it's worth it. :)

i usually just brew it and then

grab it at some point in the day

and drink it. 

i do a clean sweep of the house

and put any toys away that have 

made their way out,

make sure the kitchen is scrubbed

and clean/dishes done,

make our bed, 

straighten pillows on the couch 

and light candles. 

i can't really move forward with

school or anything else 

unless everything is in order. 

we make lots of messes and

have tons of fun in our

home but it's quickly put back in order

when we are done, 

and everything has a place. :) 

w took them out to play in the rain. 

and i got a little happy box ready to

mail to a very generous friend. ;)

we don't do any worksheet

type school on fridays 

since that's our homeschool

group day. 

also, she flies through her work,

so i've been combining days during the week so she's challenged a bit more. 

here are some sheets she's finished 

this week. 

reading, word recognition,

handwriting and math. 

sutt came in and played in the

empty box while i

sorted and put the papers away. 

then we headed to our little group. 

last time, we did a nature walk

and this time was at one of the 

families homes so we did circle time

(music) and then put soil inside 

pumpkins so we could grow

them at home! 

she's made some sweet friends. :)

sutton was nervous at first because 

he thought i was leaving but then 

she found a baby doll stroller to push

and he was good. 

teamwork. :)

his nap is usually in the morning while we do school (usually 10-11:30ish) 

so he was tired!

he had a solid car nap so he was

refreshed and ready to go. 

we always hit up target

for holiday clearance 

and i got several costumes 

at 70% off that i put

away for Christmas gifts. 

somehow i snuck them without 

willow even noticing!

I also grabbed some rope lights

at 70% off to save for 

suttons big boy bed. 

gonna me super cool. :)

willow has been playing with her 

"levee and meadow" babies a lot. 

i got these for her after we had them 

because she was so sad that

she didn't get to hold them. 

in hind site i wish she had held levee. 

she wouldn't remember but we could

at least show her a picture of it. 

but that okay, we have eternity. :)

this is also the age with sutton

that i'm always sweating by the time

we leave the store. 

he hates riding in the cart now

since he knows how much cool stuff 

there is to run too. 

i carry him and talk really soft to him

and he'll usually be content with that

and start "whispering" back. 

but man it's exhausting!

came home and played for about

an hour and NEEDED 

another spark after that early

wake up call!

then we headed to my parents church

to say goodbye to my dad

and the team he's leading to 

colombia for a mission trip. 

i've been able to go twice,

but he goes every year and just

loves those people. 

found a ladybug. 

and then drew a picture of herself

for poppy to bring with him. 

and of course found a puddle. :)

actually made it to the post office

to mail our package! 

willow is fascinated by putting the 

boxes in and then watching them 

disappear. 

he liked running and hearing his echo. 

delivered some milkshakes

to some sick friends. :( 

wasn't gonna post this but it's real life. 

got pretty sick when we got home. 

when i hold my head up for too long,

my body kinda screams at me to stop 

by getting physically sick. blah. 

so sarah and i laid down by the tub

while they took a bath. 

i try to just do mind over matter

to get through the rest of the day

after that. 

it'd be real easy to give up but

i won't. :)

got sutton out and 

unloaded the dishwasher.

he hands the things to me so i

don't have to bend down and

it's a huge help!

willow likes to stay in the tub 

longer and play. 

best sight besides an empty dryer

is an empty washing machine. ;)

started a load. 

i think it's time to empty the little

trash can. yikes!

for some reason i am so bad

at doing these simple little tasks

that will take 30 seconds but 

i'll spend an hour scrubbing

baseboards. ugh. 

these two things will make 

you have the best smelling laundry ever. 

i used to make our detergent

but man i love good smelling clothes. 

changed into cozy clothes.

i usually try to stay in regular clothes

until w gets home, but fridays are

his really late nights at work

so i give myself a pass. ;)

sutton is ready for bed at 4:30

and it makes it really tricky to get 

everything done and supper made, etc

in time. 

i've tried everything to move it back

but since he just will not take an afternoon nap, 4:30 it is. 

he sleeps until about 7am so it

definitely works for him and that's 

what matters. :)

willow did the same thing so i know it's 

just temporary. 

anyway, he was so sleepy

and supper was still baking so 

we did a little sock puppet show

to keep him entertained. ha! 

ready! luckily i had pulled this out 

of the freezer the day before. 

it's called confetti spaghetti 

and everyone loves it.

i use whole wheat angel hair pasta

and ground turkey instead of beef. 

it's a tiny bit spicy and just so so good. 

he ate it up. :)

i love how he always pushes the food

in with the back of his hand. 

night night sutton. :)

he had been saying "nighhhhhht night"

for about 30 min so he

was happy it was time. 

precious boy. 

i lay him down, put a blanket

on the side of his face and 

turn on a little lantern toy that

plays soft music. 

then willow finally got out and put her

jammies on and ate. 

she had applesauce too. 

she had lots of broccoli (her fave!)

and sweet potatoes 

at lunch so we skipped veggies. 

she chilled out for a bit

while i cleaned up the kitchen 

and switched the clothes to the dryer. 

then we had some "just girl time"

with a "swack and swuggle". 

she's asked for that every night

since she was tiny. 

i got it stamped into a leather cuff recently because it just makes me smile.

i hope she always says it that way. :)

when the laundry was dry,

i folded it in here so we could

still hang out. 

she really likes for me to watch 

the shows WITH her. 

it was raining hard and steady

and since we have two skylights 

in the living room, 

it sounded awesome!!

at around 7, she heads to bed

and we visit and pray

and she usually asks a million

questions. ;)

we watched one of these bible stories together and since this one had

satan in it, she had lotssss

of questions. 

she also said 

"when i get to heaven

and meet Adam and Eve, 

i'll be a little bit shy. 

but when I meet that boy 

that killed goliza (lol!), 

we'll have so much fun playing together and i'll tell him potato pants 

and banana pants and 

he'll laugh so hard and then he'll faint". 

after she's in bed,

i do a last clean sweep and

dim the lights so it's super cozy

when w gets home. :) 

he got home around 9 and ate

and then shared his ice cream

with sarah. ;) 

then we watched a billion episodes 

of the mindy project. 

that show is HILARIOUS.

we just started season two. 

the end. ;)