Today and tonight I feel completely and utterly blessed to
be living the life I am living. And it has been a while that I have not felt this,
so it is a warm and comforting feeling. I am welcoming it back with open arms.
And it was a tough and rough day like so many over the
last months. We had our third major hospital visit for Beauty and it was
overwhelming with information, talk about braces and efficacy, changing our
minds and going for a hard core nighttime brace for bed and spinencor in the
day, discussing potential surgeries in case she progresses. It was hard. And scary.
But I felt my “flow “come back. I felt ME come back. I was
what I call “being in my flow” with it..organized..smart..educated…articulate..clear
..Concise in all of my questions and comments. Welcome back Flow..I have missed
you for months now. Aww….
The nurse even asked me after if I was a doctor!!!
I left there less scared than I usually am. I only cried
once in the office for 5 mins and was able to gain control over myself. I was able
to discuss surgery without losing it completely and hyperventilating. I was mainly
calm cool and collected. I actually had adrenaline pumping through my body…almost
in positive away hearing about the Tethering cutting edge surgery that will revolutionize
scoliosis one day. It is in its infancy stages but will someday allow patient’s
spines to remain tethered vs fused and more flexible.
I appreciated the hunger in the young surgeons eyes as he
discussed this new surgery. His aggressivity and passion impressed me. His
bedside manner did not. He to me is a true surgeon. Cool, calculated. Direct.
Passionate , Hungry, committed.
And tonight might be one of the most beautiful nights of
my life so far. It is my daughter’s “We have your Back” party that I organized
for the 10 girls.
I
did this???
This is so so beautiful.
I can’t believe I am getting to experience this.
If Beauty did not have a curved spine I would not have
organised this..I would not get to be part of this…these girls would not be talking
about this stuff…
I would not have gotten to see them all with tears in their eyes when Beauty explained what it felt like at the “bracing moment” (the moment
a girl gets a brace on and knows this is her new home for her body for three
years..)
I would not have seen them put the brace on my daughter
with such care-all huddled around her protecting and nurturing her
I would not have seen them fight for which three got to
try on the brace and dance with it (or try too!)
I would not have heard their answers to my questions “How
do you feel as her friends though this? How do you think Beauty feels? How do
you think I as a parent feel? I loved all their beautiful thoughtful and honest
answers.
I would not have gotten to see them play on the piano and
sing all together in perfect unison.
I would not have seen dance after dance after dance. Their
graceful lovely bodies swaying to the beats
I got to see the group hug the gave Didi after story time.
Or the way they all promised me that they would support
my daughter no matter what.
I would not have seen the tears slide down the cheek when
one girl got nervous trying on the brace and her telling me she loved me afterwards
for giving her this experience to “try something hard”
Or when one of the girls after me giving a speech on how
we should never hide what is different about us but show it off with pride to
the world..admitting candidly to the group that she has ADHD and on medication
and wanted now all her friends to know.
I got to see my daughter in her perfect splendor. At her
very best and most vulnerable. I got to see how she is seen through their eyes
I got to see the impact I had on these girls. The impact
my daughter has on them. I got to see them all change before me and record this
night in their minds forever. I am not sure they have ever heard such honesty
form an adult..i told it like it is. No sugar coating.
I got to teach them and coach them and preach to the to
be proud of their bodies and differences and souls. I think I impacted their
lives in a big big way tonight.
I felt the vibe of making a difference. For me..for
them..for Beauty.
I saw them give her a totally unexpected and beautiful gi
with the most beautiful card ever.
This. This evening. These moments..are what I live for. What
we should all live for and strive for.
Not for perfection. Or perfect health. Or a perfectly straight
spine.
THIS. HERE. NOW. THIS moment that I almost didn’t get to
have. That she almost didn’t get too have.
That I almost wished away. For her..for me
I am welcoming life back into my heart. I am taking it
all. Each beautiful precious wonderful thrilling scary moment of this journey
that was given to us as a gift that we can unwrap one lovely moment at a time…if
we can find it in our strength to do it.
And this journey that was given to us to live? We are
going to make sure to live it to its fullest . Of that I am now sure.We are ready to take this on now and
make it more beautiful than anyone could ever expect. We are going to move
mountains this girl of mine and me. Together. Who would have known?
And “Embrace” it every beautiful and painful and heartbreaking
step of the way. And take every moment of lovely out of it until we have sucked that
lovely dry. Crisis has a way of taking the lazy out of life. Has a way of
waking us up pretty quickly out of complacency.
“When
Man Plans-God Laughs”
,..and that is why we need to take the unexpected “curves”
and twists of life and not only resist them but embrace them. Life never makes
us any promises-we just pretend when things are going “well” that it is meant
to stay that way. Especially for us. Bas things happen to other people right?
Trust me…it doesn’t stay that way. Each day is different. And unique.
Deal the hands you are dealt
With
as much fucking grace as possible.
Only then..will you find your way back to joy and joy
will find it’s way back to you.
Welcome back Tarina. Welcome back Me.
Let it all flow through me again.