Tuesday, March 12, 2013

First Angelversary: The day that changed my life


I'm grateful that your short silver thread crossed mine.
I love you son.
According to the ancient Greeks, the three “Faiths” or goddesses control the silver and delicate thread
of our lives. They get to decide when we will be born, how long we will live and when to cut that delicate thread, or in more plain words:  When we will die.  According to me; there is another thin and delicate thread in life that separates people in two groups: the ones who have experienced intense loss or pain, and the innocent and carefree that haven’t.

On the day that changed my life, I stared at my reflection in the mirror acknowledging the new gray hairs, the wrinkles and the under eye bags that were not there two months ago. I was also able to see Zach’s oxygen levels on his monitor; and I also had to give him credit for how far he had come on his battle for every breath since birth.  I decided that maybe some make up would help me cover up the exhaustion, the lack of control and the overwhelming feeling of having to become an expert, overnight in everything that was Zach related. I also convinced myself that SOMEHOW we were going to pull this off.

I was unable to get a magic wand to make my baby healthy: To heal his muscle weakness, to grant him a blink and a swallowing reflex, to give him facial expression so he could cry or smile… at least once. I was tired of praying and unable to “fix him”. But I was able to care for him, accept him and give him the best possible life: A life filled with love.  I swore to be strong for him, to catch up with the laundry, the housework and the life that was placed on hold after 50 days in the NICU. This was our new normal now, which included: a chunky angel, a g-tube, continuous oxygen and a monitor. (a.k.a.  pulse oximeter )

I was determined to make the best of it, when suddenly his monitor beeped just as it did so many times in the NICU: His faced turned red, then blue and then his heart rate and oxygen levels went up and down; just like the emotional rollercoaster that started 22 weeks into the pregnancy, when we were told that there were problems. The monitor stopped beeping, and he was stable again. As I held him, I felt his breath battling uncertainty on my chest. A battle that became all too familiar after each genetic, blood or metabolic test that would come back “normal”; or inconclusive at best. During the pregnancy, we were told that our best case scenario would be an isolated orthopedic problem. The worst case… would be that Zach’s fixed wrists and clubbed feet were a symptom of a larger neuromuscular condition. Needles to say…We’ve never prayed harder for an orthopedic problem.  

It was time for a diaper change, when another beeping of his monitor brought back that blue shade and the memories of his birth: a silent room that confirmed our worst fears: It was the worst case scenario. Zach was put immediately on life support and rushed to the NICU.  My husband‘s fear showed all over his face as he described to me all of our baby’s “problems”, before I was even able to see him. My heart broke with the shattered dreams of soccer and baseball games… with the resounding question that still haunts me: - Why? His numbers went back to normal and with that, the reassurance that he was given to us for a reason, fearfully and wonderfully made, he fought to come home to us, he was still our miracle worth celebrating.

The rest of the day was triathlon of diapers, formula and more monitor beeps and blue shades, lasting each one a small eternity, leaving me unable to think or to even grasp what was really going on.  Last thing I know, we were running into the ER screaming: -He is not breathing! And in seconds a myriad of doctors and nurses were rushing in to assist our boy. As the all too familiar ventilator approached us again, our last meeting with the doctors hit my brain like a bullet: Without a diagnosis there was basically no hope, they feared that his brain was not sending the basic signals to perform basic life functions, his muscle weakness wasn’t helping him gain strength to keep up with his growing body, and they feared that there would be at some point, a breaking point. We were given the option to decide when to take our baby home, and we discussed. Gulp. Do not resuscitate scenarios.

Suddenly there I was, in a room full of doctors and nurses, explaining Zach’s fat medical record in less than a minute with terms that not long ago were completely foreign to me; saying words that no mother should ever be in a position to say out-loud, crying and facing our most feared truth: It was time to let go. Zachary was catatonic at that point and we were given a room to have privacy. The next morning we were meeting with more doctors; to set up his now official hospice home care. With all that madness I had forgotten his medicines and feeding pump at home, so I rushed back to get them as my husband stayed with our boy.

Crap! It was 8:05 and I was late for his medicines and eight o’clock feeding. A nurse stopped me as she saw me running through the hallway, like a madwoman: -Can I help you?

-I came to see my son, He is in room 240.

She quietly moved aside and pointed the way.

When I came into the room, my husband David was holding Zachary in the recliner and said the words that will continue to echo in my heart until I die:
-Your son is face to face with Jesus. He passed at 7:32.

My knees hit the floor with Zach pressed once more against my chest. Our reflection on the glass window was just too painful to watch: His little body curled up with whatever was left of me, as I screamed at the top of my lungs: MY BABY!

He was two months and two days old. In a matter of seconds his skin became soft, and he felt so… cold.

That day life kicked me out of the modern mom debates that my old innocent and carefree person wanted to join so bad: Breastfeed or formula? Work or stay at home? Spank or discipline with love? Instead I was thrown into a set of decisions that no mother should ever make.  Instead of swearing that I would feed my baby  just organic food… there I was, swearing that I would never forget him and choosing over an open or closed 3 feet long casket.

Zach painfully pointed to our self-centered world and shattered it to pieces, he showed me that every breath is worth celebrating, and that contentment consists of a warm bath followed by a massage and Mozart’s music. He showed me that not doing can be just as powerful as doing, as friends, family and total strangers were brought together to support, encourage and help. He showed us that sometimes, we just have to let go and accept that no matter how hard we try, we can’t control it all.

That day, David and I became once more childless, this time not by choice. The Fates decided to cut that fragile silver thread that was my son’s life. As short as it was, it was enough to teach us unconditional, almost visceral and irrational love. Love with everything that it entitles: Accepting, celebrating, speaking up and letting go. Love that brought me down to my knees , that served me a huge slice of humble pie; love that made pray sometimes in anger, sometimes in worship, sometimes with my face on the ground begging for a blink or a breath. There is just no going back after that. No matter where life takes me now, I will never forget this day: The day that I joined the ones that know deep loss and deep pain… hopefully I will also join the ones that are turned into better people because of it.

Sometimes I miss my old care free and innocent self; but I miss my son even more.

Now the only thing left to do is celebrate his life. After all, his tiny delicate silver thread crossed mine, bringing a hard earned new level of appreciation for all the miracles that my old self probably took for granted: eyes that blink, wrists that bend, legs that kick… our fragile human nature so whole and so broken at the same time.

These days I look at myself in the mirror, still trying to cover the same flaws that are part of this new self that now wants to reach out. As I put on my mascara and try not to cry, my questions big and small fade into acceptance. Memories become more meaningful and less painful. But I still remain forever changed. I crossed my imaginary line and knew deep loss… personally. I became the mother that naturally any mother fears to become. I also became a different kind of mom: Zach’s mom. An angel’s mom. But still… a mom.



What an imprint you left in my heart sweet Zachary.
Miss you always.




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