A Fly On The Wall In Someone Else's Nightmare

I will open this piece with a WARNING.  This message contains very graphic images that may make some people uncomfortable... 

It was late on a Thursday night and with every mile driven, I was getting closer to one of the most nerve wrecking experiences of my life.  I was about to document the birth of a child, while that seems like a blessing, this child was going to be born with Miller-Dieker Syndrome.

Miller–Dieker syndrome (abbreviated MDS), Miller–Dieker lissencephaly syndrome (MDLS), and chromosome 17p13.3 deletion syndrome)^[1] is a micro deletion syndromecharacterized by congenital malformations (a physical defect detectable in an infant at birth which can involve many different parts of the body including the brain, hearts, lungs, liver, bones, or intestinal tract). In this case, it is usually mainly the brain being affected.

I remember the panic setting in as I approached the door to her room.  As I opened, there they were; smiling.  SMILING?? This was a typical gesture from the couple, optimistic and kind hearted, and it was clear they were nervous to see me too. As the time went by, we talked about EVERYTHING, as if to justify the awkwardness of my disposition every time the nurse would walk in and pull the covers back.  But as the last exam came to a closure, the room began to fill with specialists.  It was time to push.

The mood shifted from what seemed like an awkward date, to something different,  something scary.  I was pushed into a corner with nothing to brace but a camera and a stuffed lion.  Since we were told, Aedan probably won't make it through birth, I would need to act fast.  So, through the eye of a lens, a moment so intense and full of emotions, I witnessed something so profound that time stopped...

 There he was, lifeless, purple, and limp. Suddenly something so powerful came over me.  My camera hit my chest as I watched them take him away, my ears went def and all I could hear was the ponding beats of my own heart and the faded screams from mom, begging not to take him yet.  I squeezed my eyes closed and started to pray out loud ( I never pray out loud) "Take a breath, baby. Come on Aedan, breath baby. Breath. Please breath.  Oh God, please help him or take him now.  Please God....Please... 

Reality came rushing back when I was yanked into the next room only to be faced with the first breath.  I watched him turn from ashen purple to a warm healthy pink.  Holy shit... Did I just witness a miracle?  Did this child just beat the odds set for his future? 

Aedan opened his eyes and looked right at me.

...Then he smiled.

"No", they said. "Go get the Chaplin now, we don't have much time..."  It was time to baptize Aedan before his exit from this world...

It was after 3am and it was time for me to leave this family to endure the last few mins they had to get to know their son.  My job here is finish...

A few days go by and I get a text that says, "We are bringing Aedan home!"  Wait a min. WHAT?  I couldn't believe he was coming home.  I began to prepare for this milestone,  the countdown to his death seemed to be extending with every passing minuet.  It was already a blessing.

It was perfect.  He was perfect.  His body temp was so low, they had to keep him in a room that was just shy of 100 degrees.  While we were soaked, no one was really bothered by it.  Just to be in the room with him with out machines and tubes and lights, was a miracle.  Again, we all knew it wasn't going to be long.  We all knew that moment would come, but we just lived for every second that was granted to us.  But, we knew it was coming...

This is what days of not leaving your child's side looks like.

Hospice comes in and does a 2 min observation for heart beats. 

Time of death was called at 5:38 pm

Hospice called in the TOD and we had roughly 60 mins left with baby Aedan before his journey to his final resting place of Joplin, Missouri 

We got his foot prints and a plaster casting of his little hands.

Me-ly and I removed his oxygen tubes and then he got a bath. 

To see him completely free from the cruel stipulations of this world, to see him with out struggle.   

Mom and Dad's last bed time cuddle...

 Eight days we got with Aedan.  192 hours. 11,520 minuets. 691,200 seconds.

Everything in life creates a circle, spinning on an axis of life and death.  The everlasting, eternal revolving door of passing lives, over and over.  As the sunsets, it begins to rise; but in another place at another time, in another part of the world.  We do not witness it, we just know and much like that daily pattern, we will treat the passing of love like the sun setting upon the ocean; as it kisses the horizon.  We know that in this circle of time and of light, we will rise with the sun to see another day. Life on Earth is a story and inside that story are a multitude of other stories all happening at the same time.  If you are lucky, your story will collide with another amazing story and while some might be brief chapters in your collection of moments, the impact can suddenly change directions of it's journey.  Aedan had eight days worth of story, but those days rippled into thousands of stories across this planet.  He was an Angel that came with a message:

Do not fear the future.  The world is yours.  The life you long for can exist through the act of selflessness, love, empath, kindness, hopefulness, laughter and the will to thrive.  You are not alone, you were never alone and I am always with you.  We are always together in this life and beyond.  I have not left,  I am in the water,  you can feel me in the wind, you can see me in the sun and in the stars.  You know me and I know you and it's all going to be ok.  Just keep breathing, because we are all a part of an infinite connection.  A circle, you see?  Forever...

Dear Aedan,  

Wow... You created a rapid evolution with in my heart and my mind.  You showed me a path I was scared to embrace, and you reminded me that my journey was not about me but about the people who needed me.  I am taken by your wisdom and your lessons.  I will forever call you my mentor and my child, I may not have made you, but I loved you like my own.  I got to witness your grand entrance and I got to witness your impeccable exit.  Thank you for all you have done for me and for the world you ascended from.  We are all grateful for your short-lived journey and I will always be remind of you, every time the wind blows.  

      Your Photographer,

Kaci Okabayashi - Surowiec 

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Peace in the "Mile High" City.

I woke to a text that said "Call your mother".  In those moments, I became aware of my Aunt April's sudden death.  April was my mother's Sister, she had spent the last few decades in Colorado; just the amount of time of my entire life.  I did not know her.  I mean, I "knew of" her but I never really spoke to her as an adult.  My mother's family is spread across the lower 15 and when "life" happens, you tend to put "family time" on the back burner.  With in the first hour of my morning, I booked four flights to Denver, with my parents and my sister.  This will be the first time in 17 years, that we spend more than a half a day together (the four of us) and now we are sharing a hotel room for almost a week. This should be interesting...

From Houston to Dallas, then Dallas to Denver, bla bla bla...

I put my arms around my cousin for the first time in ten years.  Prior to that ten years, it had been ten more years; so I guess you could say our relationships were wavering.  So delicate are your words, in the beginning, when you are trying to justify the time.  Trying to express love to someone that (A.) just lost his mother (B.) Doesn't really know you (C.) Hasn't slept in days, seems so awkward at first. The courtship is uncomfortable but we still throw ourselves in the deep end of emotional oceans, sobbing and crying.  I find it to be somewhat primordial, that  DNA you share, somehow connects you with out judgment.  Suddenly, maternal instinct takes way and you are embracing a stranger that you've known all along...

My desire to know April suddenly became priority.  I realized I had roughly 72 hours to walk in her shoes, and it started with meeting TJ my 19 year old cousin.  Quiet, and jaded, he towered over and submerged me into a hug that felt so necessary and long deserved.  As I walked into her home, I was breaking a threshold in time and distance.  I sat where she sat, observed the view she frequented and enjoyed the company she so deeply enjoyed.  I listened to stories from her husband of 37 years (Uncle L.J.) and looked at pictures of my family that I hardly knew. 

The day turned into night and (with very little sleep) turned into day.  And, today is the day I decided to explore her treading grounds.  Golden, Boulder, Canon City, and Florence are places we visited.  As a girl from the Gulf Coast, the altitude and topography were foreign for me.  Fall Season was well underway, the trees from evergreen to a fiery red death, garnished the ground and it left me breathless and craving more.  I realized this was the most beautiful place I had ever been in the states.  The air was sweeter, the people were pleasant and in no rush to blast through their days.   I was enlightened by the tender joy and vitality these people projected, the local scene was as pleasant as the mildly cool weather.  We took a train through the mountains where we sat quietly, taking in the magnitude of so much beauty.  There are no real words to express the level of spirit I felt immersed into the mountains, along the riverbed, my heart sang.  The emotions started to swell as empathy rose into my chest, like magnets connecting.  A spark of understanding ignited this light that filled my chest with heat and understanding.  This was my moment with her, this was her voice telling me that she never really left, and with every breath that filled my lungs, she filled my soul with peace. 

A grieving husband, a grieving son, A grieving sister, and grandson, it was time to say our last "Goodbye"...  Why wasn't I grieving?  I guess I just see the world differently.  This moment was a gift,  a gift that only her passing made possible.  So, on the balloons we wrote our last messages to be launched into the Heavens, one last time.

April, 

Thank you so much for your sacrifice.  I needed to know that my parents still hold hands in public and my dad still worships her.  Thank you for showing me that my heart still beats for the earth, that my soul is alive and well among the foothills of the Rockies. Thank you for my time with my sister,  I need her so much and I finally satisfied that moment, that memory of (just) us as adults, reflecting on the past. It's different and it's the same.   Thank you for Tommy, and for TJ.  Somehow, our future seems closer than our pastime together.  Thank you for LJ,  I somehow recognized a connections to you in his hugs and his laughter.  Thank you for the presence you left in my soul and in my thoughts. Thank you for the opportunity to share the time with all of my family that would not have happened if it wasn't for your passing.  I know death doesn't have to be something you "grieve" but a celebration of life...

In the end, we are all heroes.

I documented some of our trip and want everyone to know these images were shot with my cell phone and the color of these photos are all true to their original shot. 

IF YOU ARE A FAMILY MEMBER, AND WOULD LIKE TO PRINT ANY OF THESE SHOTS, SHOOT ME A MESSAGE AND I WILL SEND YOU THE ORIGINAL  LARGE FILES.  THESE WILL PRINT POORLY...

Our first "selfie" together!

The Trees...

The train to the gorge. 

Me ^ & Mom^

Mom & Dad 

Mom & Dad #selfiemode

My sister

Mom being "upity"

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This train ride was the most amazing experience.  I know it sounds silly but if you EVER get the chance to take this trip-------> http://royalgorgeroute.com

I GIVE THIS 2 HR TRAIN RIDE FIVE STARS!!!!

Canon City, Colorado 

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The next city was Golden, Colorado.  Perfectly nestled into the mountains, this is small town life.

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Boulder, Colorado was our next stop.  This is a place where people like me, go to live their "hippy lives". The food, shopping, people, vibes, were perfect.  This is where I left my heart....

Pearl Street Boulder, Colorado 

https://bouldercolorado.gov/parks-rec/boulder-reservoir 

These photos have no filter.  This is the way this mountain looked after a forest fire...

Hillside forest fire

straight out of the camera. No filter.  These are the TRUE colors of our nation...

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Our balloon service was held at the park where April and LJ use to take their lunch breaks.  We sat at the table where she commenced her daily routine and wrote messages to her, just before launching them into the Heavens. These were the moments that will forever burn in our minds, the bitter sweet tears of the departed.