“Born a micro-preemie – I’m here to belong!”
All parents of special children learn this: what we know from our ordinary life holds no tools to deal with this kind of tragedy. My daughter was born by emergency C-section on a beautiful hot summer day in August 1990. Born four months early, she weighed 881 g (1 lb. and 15 oz.).
As a tiny high-risk baby, she barely had a chance to live through the night.
Her lungs were not developed yet. She was immediately intubated, and a respirator was breathing for her. The incubator became her home for the first four months of her life. After six months in the NICU, we were able to bring her and her oxygen tank home.
The tank was her companion until 2009 when the last attack on her health made her lungs collapse and the respirator saved her life again. While watching my daughter survive in the incubator, I was not only in a foreign country with a language that was not mine, everything else unfolding around me was scarily unknown and frightening.
I entered a new territory filled with tears and fears and no way to escape. I had to look at the pain my daughter was exposed to in the eye. I had to learn to understand the chaos that was unfolding inside.
Fear nails us. We carry one word imprinted on our forehead: LOSS. That’s the life of a NICU parent. In tiny steps up until today, I have been on a healing journey with my daughter.
For me, healing means to become whole again as the opposite of being broken into pieces.
I also believe as our children grow, and we learn to live the life of a special parent we need to make our own health and dream as much a priority as everything we do for our children.
As we gather our strength and fill up our cup to walk this path with trust, acceptance, and joy we can become the parent our child needs without giving up who we are.
Yesterday I told Sarina: “I’m writing a story for Prematurity Awareness Day.”
“It’s on November 17th. I’ll be wearing purple,” she said matter of factly.
We had not yet spoken about Prematurity Awareness Day at all.
The way she knows things and doesn’t share her thoughts or include others is typical for her. She aches to connect with us, but she often doesn’t know how to or forgets to share her wishes until the last minute.
“I’m a dreamer. I’m often floating around in a bubble. The wall of my bubble is too thick for me to clearly see or hear what’s going on outside. I’m hard to be reached in there,” Sarina says. This is how she describes her absent-mindedness.
The wall between us and her can be thick. I often think of her bubble as the incubator that saved and protected her and has given her life, but it also did not allow her to bond or connect.
Imagine instead floating around in the softness of your mother’s womb with its clear boundaries and protection you’re abruptly being placed into an excruciating noisy machine with nowhere to lean; the most comforting sounds of your mother’s body and her voice are gone.
Gravity is your enemy. You are too tiny to move or look around for orientation. You can’t even cry. Tubes have been forced down your throat leaving scars for the rest of your life. The mind-blowing pain of needles stuck on every inch of your body without warning, including your scalp and your eyes, puts your not-fully-developed nervous system over the edge. You are lost. Just like your parents are.
I got to understand her way of being in this life, her struggles, her limitations, and her brilliance, by understanding the missing pieces of human touch in her early beginnings.
A baby and all human beings respond to touch. It’s in our bonding that we gain a greater sense of self.
Sarina is either off or on. The concept of together does not exist. If she is on, she stuns the observer with her wit, her brilliance, her fiery way to take a stance for human rights and minorities like herself. But she doesn’t know how to stop. She’s not aware of the other. She needs conscious people who stand in their own truth willing to observe and to listen and offer a hand when needed.
To be able to drop their concept of right or wrong is essential to giving Sarina a chance to belong.
If she is off, she gets lost in time. Caught in self-conversation, unable to recognize what’s going on around her. It’s in this space where she is often judged and labeled, and her feelings are hurt by the rudeness and self-centeredness of others.
Her social awkwardness puts her in a sad and lonely place. The older she gets, the more she realizes her limitations. Sadness turns into frustration and more days spent alone at home.
I can reach Sarina by being fully present and asking the questions I know she is pondering. We have grown a habit of having car conversations we tape. It started as a way for me to keep her present. If she isn’t engaged to be part of this life she gets lost in her bubble. I have noticed the confinement of my two-seater car is suiting her. “It feels like an embrace,” is how she reacted to my inquiry about that.
In connection to November being Prematurity Awareness Month, I asked her:
“Imagine you meet Ellen DeGeneres. Tell her your elevator pitch.”
On the spot she said:
“Hi Ellen, I’m Sarina. I’m 28. I was born a micro-preemie and started my life in an incubator.” And after a pause…“I’m born with hiccups.”
The big smile on her face is making my day shine. Sarina has an air of glamor mixed with a big bang of magic around her. It’s infectious. If we let her, she lights up the world.
My daughter is teaching me everything I need to know. She puts the magnifying glass on our way of life. She challenges ignorance and judgment and loves to quote: “Think outside. No boxes needed.”
Do we let her in? Or keep her out? It’s our choice. You know which one I choose.
In recognition of all preemies around the world, wishing you a wellness-filled Prematurity Awareness Day!
This story was first published by The Wellness Universe in November of 2018