Well, let the countdown begin…I mean we have been ‘counting
down’ ever since they told us about the surgery, but at that time it seemed SO
FAR off and we have been so desperate to see Raegan free from her seizures. Up
until now we have been pretty cool, calm and collected about it and I guess true
to my nature have just sailed along “taking care of business” as my dad would
say.
Here I sit and it’s Sunday. One week from today I will fill
my day with cleaning and organizing the house so that we can come home and
relax and not having to worry. I will pack, repack, repack and repack our
suitcases a million times as I obsess that I am going to forget something. I
already have Carley DONE which is nice. We have to have some sort of family
dinner so that my mom can come and spend some time with us but especially
Raegan. (PLEASE keep my mom in your thoughts and prayers. She is trying to be
really strong but this is SO hard for her and with her Parkinson’s I worry for
her). I will deliver our luggage to our friends since we can’t fit us AND our
suitcases in George’s little car. (HOW does he fit in it everyday???)
We have many ask what are plans are for the weeks we are
gone. Our original plan was to have some very dedicated family and friends take
care of Carley which we are so blessed by. It would have been wonderful for her
to stay in her own home but it would have been hard as she would have seen us
twice maybe three times which would be hard on all of us. It was very important
to George though that Carley be a part of our family as much as possible during
all of this. He will be taking the first week off to be with us at the
hospital. So he has decided that he will be “Mr. Mom”. He and Carley are going
to stay in San Francisco that first week. He is actually excited to spend that
time with her and becoming better buddies! The next 10 days we have been
blessed with an offer that humbled us with gratitude. George showed up to work one day and out of
the blue his co-worker approached him, told him that they have been following
Raegan’s story and researching the surgery. They felt it was going to be so
much and wanted to help. George was so overwhelmed when they offered to keep
Carley while we were in the hospital. WHAT?!?! Let me tell you I don’t know
what your faith or belief is but we truly believe from the depths of our souls
that God does care about the details. We may not understand WHY we go through
what we do, but He does care. So Carley is going to be with them those next 10
days. It is going to be great all the way around! 1) They only live 40 mins
from the hospital and also offered George to stay with them so Carley will get
to see him every day, 2) They have three boys-she is going to have so much fun
making new friends 3) They are an AMAZING family that is just going to take
care of her as part of their family. (They already have a princess toddler bed
for her, I was going to send my pack and play. I was told no way she needs her
own space) J We are also, blessed that on the day of her
two surgeries we have a couple that is coming down to sit with us. It will be
nice to have them there but it's wonderful because they have told us over and
over, they are more than happy to be there for us but that we are not to
“entertain” them while there. If we want to talk great, if we want to walk
great, if we want to be left alone, perfect. But they will be there to support
however they can. For that I am grateful.
I have been blessed to have God take care of the details
again. I have made my way to an online Epilepsy support group on Facebook. Each
and everyone of us are walking in the same path in one way or another. It was started out of Arizona but they have
been graciously adding more of us from other places. These moms and dads know
EXACTLY what you are feeling when you post “she had another seizure, or the
meds are doing this” there are several that have had surgery and it is
invaluable to have someone that has been there and done that.
We have been blessed with friends that are here for us no
matter what. Daily we have people reach out and want to know how they can help.
I have another group of online mom’s that has been a sounding board which helps
so much and then there are the friends that get the daily calls to listen and
support the ramblings of this journey, so glad they put up with me. The mom’s
playgroup that we don’t get to see as often as we would like but that makes friendship
invaluable. The freezer meals a dear friend just sent to us that will allow me
not to have to worry about dinners this week. THANK YOU ALL!
So what can you do? It has been brought to my attention that
people say “I want to call her but I don’t know what to say” or “I feel so bad
I don’t want her to feel bad” Let me tell you right now. There is no right or
wrong way. I mean really I’m the one that sometimes feels awkward because I’m
not sure how to respond. I know thank you is the right response but sometimes
there is that awkwardness and THAT’S OK! Every time someone posts something on
my Facebook or on Raegan’s page or sends a message or calls IT MEANS SO MUCH I
truly mean that. It means so much to George when someone on a job site asks. In
fact he came home with tears in his eyes because a concrete driver that he had
not seen in WEEKS jumped out of his truck when he saw George to ask how Raegan
was. EVERY well wish and comment really does fill a little part of our souls
that seems to be breaking at times.
HOW do you prepare for something like this? HOW do you find
peace? HOW do you sleep? HOW do you function? Honestly on some days not so
well, on others we do fine. This past week has been very very hard I would be
lying if I told you otherwise. I try to hope that this next week will be filled
with more peace than I can imagine. We go on Thursday for all of our pre op stuff.
We meet with our Prepare Team that goes over all of the paperwork and medical,
we’ll meet with Child Life who will be with us the mornings of the surgeries to
help Raegan (and us) with the emotional process of preparing for surgery. They
will also be the one’s that will visit her room to play games or bring goodies.
We will then go for a pre op sedated MRI. UGH I HATE that part. I am grateful
they are so careful to cover all the bases. However THIS TIME I will make sure
to have a taco, nuggets, cheese sticks, apple or anything else to avoid the 45
minute scream fest that followed the last sedated MRI.
Ok so there it is. There’s my thoughts for now. Lots of
rambling I know. THANK YOU from the
bottom of our hearts for everything everyone has done and for all of the
support we will receive. We love you all and as always, BLESSINGS!
