all pics for this are on the tarinaw.com hidden part of blog that corrina can access
Title: While We Wait - Day Before
Surgery
March 18
These blogs won’t be fancy or beautiful
They wont be edited or pretty and may have
typos
They will be raw and real ... and where we are
at
And often like this one - short and sweet
Emma was admitted today to hospital where she
prepares for her surgery tomorrow. She has already seen two anesthesiologists ,
two nurses , one resident surgeon , a physio therapist, a breathing specialist,
a nutritionist and an amazing guy who admitted us and was the coolest.
She has signed countless papers herself ( age
of medical consent so parents sign nothing) to say she is aware of the risks of
brain damage , being paralyzed and even death as a spinal neuro surgery ( these
won’t happen but they have to warn and it is not fun to imagine it )
She has been taught how to sit up and roll
like a log post surgery and how to breathe
Taught affirmations and stress reduction
techniques
She has visited the school here and playroom
and seen so many cases worse than here own and said “ mom there are so many
people who have it worse than me “
She has felt compassion here
And been nutured
She has already grown up more - I see it
She had a surprise visit from our new friend
Tina who is our new friend as her daughter went through this a year ago
Cassie and Liv are here with her now ans
chatting in the solarium at the shriners where a room was made by parents who
lost their son here and dedicated a room to him
Other of her friends are texting me and making
my day and making me smile
We are surrounded by love at every turn. Text
messages , phonecalls and emails are pouring in and have been for the last week
.
Last night we had an amazing family dinner
with sandrine and Didi there for the send off too
My heart was and is full and will be as long
as it keeps getting filled with this fuel .
In situations like this you really really get
to know your people and whom you can count on when things gets rough . You get
to know what is important in life and hopefully keep that feeling inside of you
forever
Tonight she gets flushed out for surgery (
won’t go into details but very unpleasant process ) and takes the sterile
shower and antiseptics and prepares for her long nap and fight after that
And we wait .. and wait .. and wait
And we watch our daughter at her most
powerful.. and most vulnerable... being adored
And we feel terrified
And angry
And sad
And unsure
But mostly we feel grateful for our blessings
and abundance of love and support and knowing that whatever is “ taken away “
is given back to her in countless other ways
We go in strong knowing our girl has got this
. We are a team practicing all our lives to take this kind of thing on . And we
will . She will .
Title: To Repair With Gold -
Waiting During Surgery
March 19
I remember when Emma was born I was in awe .
How was this possible that I could feel such joy ? A healthy third baby AND a
girl ? Is it even possible to know more joy ?
And I had dreamt up that girl all my life
really I think and felt so complete with our beautiful family of five . My two
beautiful sons and now my baby daughter.
This morning as I woke up ( well got up as
clearly not much sleeping night before surgery in the hospital with Emma ) I
climbed into that same girls hospital bed and cuddled her up as she peacefully
slept
I took her in all of her before she had time
to push me away as she woke up . All of her - in in into my heart
We went through all the things you go through
before surgery the showers , the tests , the doctors coming in the room , the
social workers , the surgeon speaking to her , the surgeon and anesthesiologist
greeting her and then taking her away . And just like when she was born it
seemed like a dream - all of it - surreal and not happening
What I have a baby girl ??? For real ?
What my baby girl is now all grown up now and
going into spinal fusion surgery?
What do you mean my daughter has scoliosis ?
My daughter is a dancer didn’t you know ?
What ? You are attaching wires to her brain
and feet to be monitored by one team member the whole time ?
What ? What ? What is happening here ?
And you may think there is no joy as we sit
here waiting but it is plentiful along with a terrorizing unimaginable fear .
But joy is there
Joy we “get” to have this . In the last few
weeks the amazing moments we have shared with our daughter through this
agonizing process are filled to the brim with rawness and realness and beauty
The good the bad and the ugly of it all is all
of our story . And only our story to live together .
I have watched my daughter and learnt more in
the last week about her than I may ever know in a lifetime . In the last 24 hrs
I have an open window to her soul . She is the most resilient calm cool and
collected person you have ever ever met . Right up until performance time ( in
this case surgery ) . Then she lets it out . She scrunches her pretty face up
and cries softly like a little kitten . And reaches out . To us her parents .
She becomes our baby again after many many years of brave faces.
I watch her with her surgeon and her careful
smile . I watch her with her anesthesia senior who promised to make her laugh .
I watch as he touches her hair and face as though she belongs to him in his
heart . I watch her and he holds me in his arms too . I watch her notice the
tenderness and kindness and humanness surrounding her
I feel her heart growing
She may have in a few hrs 2 big broomsticks
and 28 screws attached to her spine .... but her heart has expanded . So have
ours
I imagine her graduation one day .. her
wedding maybe ... being in the hospital again with her one day as she has her
own baby maybe . And I see them so clearly . I know she is coming back to us
safely and I feel it more certain than anything I have ever felt
I get to have these moments . How lucky am I ?
We sit here in the waiting room and wait for
our bffs to come for a short visit and go heat up our lunches - wondering how
we will act and who we will be during our visit
My mom will come towards the end of surgery
and wait with us . And the boys will be back tonight to see their sister .
Pain will come . Loads and loads of pain and
morphine put directly into the spine for a honeymoon period of 24 hrs . Then
many days and weeks of morphine and opiads where we have to monitor to make
sure she does not become addicted
The first 72 hrs are crucial and critical I
have been told . They monitor Emma each 30 mins days and night to make sure no
paralysis since so much of spine being fused . The waiting won’t end when the
surgery is over - far from it
And then weeks and months of recovery and a
couple of years of limitations
But you know what ? I don’t care about any of
it . I just want them to bring her back to us
Safely and soundly . Woven with their magic
and filled to the brim with their amazing expertise and skill
I want her to feel unbroken . I want her to
not have to live life as she has the last 5 yrs of waiting and waiting and
wondering. I want those 20 hrs a day in brace for 3 yrs to count
I want my baby well
And not only do I want it and praying for it
I am demanding it on her behalf
And will sit here and not care about eating or
peeing or breathing until she is safely back however long that takes
And just like that first day I held her in my
Arms I will be in awe of her . Of her courage and fearless determination. Of her
certainty to want this surgery for herself . Of her beauty and grace and all
that she did and does and will always do
I want her back very very soon
Title: Nobody said this would be
Easy - 20 hrs post surgery
March 20
(Forgive me I am not feeling especially
articulate today but do want to give an update for the so many whom are
following and asking as so kind you care ❤️)
There was great elation when surgery ended .
We made a decision the three of us that was so hard and it was amazing to see
it executed. Check that box
Daughter came out alive . Another beautiful
box checked
Daughter came out no paralysis from surgery .
Check !
Spine fused with 9 vertebrae and surgery went
well check check check !
Lots of checked boxes and If we could
celebrate with a few ( many ) drinks we would have .
Reality of course sets in as these next few
days will be the hardest. Everyone warned us of this but hard to really
understand until you are there
We are there now and from what being told this
is going to get worse . Morphine is still in her spine so her pain is still (
somewhat ) manageable and will get higher as soon as the morphine in spine
wears off and on morphine pump only
Its very hard to say the least . And hard for
us . Imagine emma ??
She is so fearful to move and even move her
eyes in a normal way that is is quite scary to watch . She is of course totally
under the effects of the morphine and anesthesia and will be for a long and
while .
She is angry and irritated especially at her
parents ( us ! ) and nurses and doctors as they all pour into the room
constantly and make her speak and move
Today is more of a helpless feeling day for us
and we all know it will get better and better . But today and tomorrow I feel
like we are at WAR is the only way to describe it
And full of fear as so hard to see them to
tell her to bend leg and she doesn’t want to ( but finally does ) or hug her
body with her arms and doesn’t want to and takes all the effort in the world
and does it
They sat her up for a minute and had to lay
down as her world is all dizzy for now . And very very small
I am ok with it being small as long as it gets
big again ...
Its just hard to watch as a parent although
its all to be expected of course . You just sit here and wait and wait and
watch her in pain or sad and rely on the nurses to tell you if it is normal
Then you wait for the doc to come and do her
tests of loss of movement and then the nutritionist to come and see her
struggle with sips of boost
Alarms of machines go off all the time and
catheters in and ivs on and needles and everything else that happens after
surgery and with every medication possible it seems to counter the side effects
of the others ones
Its nearly impossible for me to imagine that she
could possible leave here in 5-7 days ... but I am told it is true
Remember for her she has lived her life as a
been with a big curve spine . Now this straight one is foreign and feels awful
to her . She has to learn to move it and sit with it and walk with it . She has
to learn all movement again
My nerves are very much on edge but my heart
is full
And each time today when I feel down and feel
I may lose it .... I remember how lucky we all are and how blessed and how much
worse this could have been
Hey my daughter has a straight spine guys and
girls !! And surgery went well . Everything else is peanuts around here right ?
( lets see how long I can feel this positive !! )
Title: I Don’t have a blog in me
today (day 2 post op )
March 21
It is very very rare that I don’t have words
or that writing doesn’t help me process things or make me feel better
Today I just Don’t have a blog in me or a
pretty picture to post . Nada
We had a really really hard last 18 hrs . And
imagine if we think its hard how emma feels ?? This is the part that makes me
feel sick to my stomach is how traumatic this must be for her
At 12pm today took four steps which is great
news as a huge milestone in all this but I cant seem to allow myself to feel it
all yet as I am too nervous and too cautious and too exhausted to allow any
feeling of happiness yet ( but of course for emma I don’t show that )
She is doing what is expected and at her own
pace but it is really hard to get her to do the leg and arm and excercises and
breathing excercises that we need to do every hour
She is hooked up to all sorts of machines and
Ivs and catheters and the night was quite something else . Feels for me feel so
scary in the night
Thank goodness for these amazing nurses and
their superb care
So she took a few steps and that is really
good news . Anxiety and exhaustion for us has been high and terrible pain for
emma and lots and lots of drugs that sometimes seem to help and sometimes do
nothing
More another time when I have more words
Title: Progress (day 3 post op)
March 22
I have many stories to tell and so many
thoughts going through my mind .... and sadly zero energy to share them
I think the word survival mode is very fitting
Emma is making some progress which is by far
the most important and beautiful update . Today she walked a little 3 times
with the nurses and sat in a chair !
And had catheter taken out and pee !
And switched from morphine pump to morphine
orally and many other pills !
This is big stuff in our little hospital life
We are very proud of our girl ❤️
We have also started a few of her friends
coming. Very popular girl she is and all want to visit and just have to be very
careful that usually one a day etc and depends on what the day holds etc as she
has so many specialists coming in and out and needs to take care of
But emma totally perks up with these younger
visitors which is desperately needed right now as she is getting very tired of
mom and dad hovering over every moment . We will be begging for visits when she
gets home so pls keep asking too when she will be out of hospital and at her
long recovery at home
I am learning so much about myself through
this journey and what my strengths and weaknesses are ( lots more weaknesses
discovered) and I am trying to give myself a break . I am grateful for the
people who watch out for me and give me both the nurturing and the tough love I
need right now to get through this
I am learning so much about emma too ... i
have spent more time in the last week with her than ever of course
And I have a massive massive appreciation for
my husband who is a star in my eyes. He is handling this so beautifully. Find
me a better caretaker for this would be impossible . He is our rock right now
Its really so much harder than we ever all
thought but tonight was so very nice to see some light at end of tunnel with a
few of the milestones
Sleep helped last night too as i slept in the
family hospital room vs emma room as was going on apprx 96 hrs with maybe a
dozen hours of sleep total
Thanks to all .... you really get to know who
your friends are through crisis and man we have a wonderful village .
I am hoping one day soon I wont have many
updates .
Gratefully
Tarina
Title: Looking back before
looking forward
March 25
As we approach the last phase of hospital stay
where emma has just has a couple more milestones to meet before she is
discharged ( will probably be tomorrow !! ) i want to look back on a few things
that many people have asked me about and also that I don’t want to forget .
Emma was diagnosed at 12 yrs old with
scoliosis which is a curvature of spine . Many people have slight curves and
are fine . Hers was not slight at all and began at 31 degrees in her thoracic
spine ( upper spine )
We never knew and was found out from an annual
doctor visit
That year when found out 2014 our family was
already going through two major other upheavals and this diagnosis of bracing
for three years just seemed like the last straw at the time and the end of the
world. But we pulled through on all accounts and I can truly say are stronger
and more united as a family since 2014 even
Emma wore a brace for 20 hrs a day for 2.5 yrs
and 15 hrs a day for another .5 yrs so 3 yrs total . Because she is a dancer we
opted for spincore athletic brace in day and rigid providence brace at night
It was a tough three years of bracing but she
did great . Was hard for me as her mom to have the extra struggles of having to
make her wear this everyday and i think she really resented me for it . I
decided that could not matter and this would avoid surgery for her one day but
was difficult to have to play this demanding role daily for all those years .
Bracing is uncomfortable and difficult and bruises and limiting and just makes
life harder
Here is a video Novartis made of emma when she
was 12 yrs old called " We have your back Emma "
(only works on PC computers for now - we're
working on a fix)
When her brace came off three years later we
celebrated so much as only went in those 3 yrs from 31-42 degrees with a
compensatory lumbar curve ( bottom ) of 20 . She succeeded and was out of
danger now for surgery as curves below 45 usually don’t progress much in a
lifetime
Such relief and celebrations as in scoliosis
every 6 months is massively stressful with hospital visits and finding out what
number curve is at . Emma has had more xrays that most people will ever have in
their entire life and will continue this way forever
Another year goes by and there we are jan 2017
for her routine check at shriners and they do xray . For very first time not
even nervous as knew she was not a surgical candidate anymore !
Well when we saw all the medical students come
in with surgeon we knew what was coming :(
She was now 52 degrees thoracic and 25 lumbar
and surgery was on the table for sure as science says she would progress a
degree a year . A very not typical case after puberty
We were all devastated
A big choice to make as she would have the
surgery in her lifetime likely before 27 yrs old but when was the best time ?
Huge decision also for a competitive solo
dancer and hip hop team competitor where movement is her life
She chose this and we supported it by us doing
tons and tons of research for the last year but it was not an easy choice at
all . It was heartbreaking.
We chose surgery bc :
She is still pediatric and able to be at best
of best shriners hospital
She has the best surgeon on history of planet
and we could not be assured he would still be here in 2 yrs
Her left lung was suffering slightly being
pushed to the side
She had zero pain and we didn't want her to
get pain before surgery as surgery doesn’t necessarily fix existing back pain
She has way less risks in surgery when young (
serious complications in this surgery possible so the less chance the better )
Recovery pediatric at best shape in life would
be 8 weeks home and limitations of some things 2 yrs where as an adult recovery
would take one year at home in many more obstacles
So truly hardest decision of hers and our
lives and until this very moment ( one day before going home from hospital ) I
had no clue if we had made the right decision or not
Here is a video made by her dance studio H4L
that did a surprise tribute to her after her solo in front of hundreds of
people ... still cry when watch is as so beautiful (it might take a little
while to load - only works on PC computers for now - we're working on a fix)
[embed]https://tarinaw.com/videos/EMMAGOSSETVIDEO-sm.mp4[/embed]
I would seriously not wish this stress on
anyone but it is part of us and our story and will always make it a beautiful
as we can
Tomorrow emma should be released from hospital
yay !! 6 weeks convalescence at home shall begin . Will be hard but nothing of
on the realms of the last 9 days on hospital
❤️🙏❤️🙏❤️🙏❤️
Title: Kintsukuroi
March 26
There is a beautiful saying that goes, “The
true life of the bowl began the moment it was dropped.” It refers to
Kintsukuroi, a Japanese art form in which the cracks of broken ceramics are
repaired with a mix of gold and resin. In doing so, these fractures are
transformed from flaw to feature, the piece from a sense of brokenness to a
piece of resilience and the beauty in imperfection. By being dropped and broken
open, the bowl’s vulnerabilities are revealed and through its repair with gold,
a new sense of uniqueness and vitality is born.
I will always hold the image of Emma on that
that operating table being repaired with gold by her strong and powerful
surgeon. And the image of her anesthesiologist holding and caressing her face
tenderly while taking away her pain and fear. They cherished her and took care
of her as if she was their own. They made the most unimaginable moments magical
somehow
We are home as of this afternoon !!! And about
to create something absolutely beautiful together ❤️
Of this ... I will make sure .
( ps thanks so much for following! This is my
last blog post of emma updates and back to normal business now as she continues
her recovery and convalescence at home the next 6 weeks)
You can see a video of Emma’s journey at the
Shriners at
@tarinawofficial on fb or instagram
