dear willow,

dear willow,

Saturday, February 6, 2016


^^ 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

^^ 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.
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. :)

Wednesday, January 27, 2016

"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. 

Monday, November 9, 2015

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. ;)
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

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 

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. ;)