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."
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."
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.