A Parent's Journey

My name is Mary Jane and I signed on to this list yesterday. I've been trying to write an intro letter and get started in this process of meeting other folks and learning what I can. But I'm finding it very difficult. I don't want to write out my son's medical history, yet again.

I recently wrote this piece to send to our local NICU, hoping to let them know a bit more about the people they serve, maybe it will tell you all a bit more about me.

It was just another day at the NICU. The Neonatal Intensive Care Unit. There was a child in every corner, flanked by machines. Machines I loved and hated. Technology that gave this new life of ours a fighting chance, but at the same time, kept me from my son. The floors were shiny. The nurses moved quickly and quietly, from isolet to isolet, child to child, patient to patient, drawing blood with angel hair straws, changing doll sized diapers, administering medications, checking for vital signs, forever responding to the constant beeping of alarms. After our first few days here I started to worry when the alarms didn't go off.

It was the third day of our second week. My body was still bloated and swollen from the shock of his birth. My feet hurt. They did not fit into my shoes. It was a day like all the others. I was huddled by his isolet, waiting for a chance to hold him, nurse him, touch him. I was allowed to change him now, remove his monitors for a moment or two and look at his body. It scared me. Not because he was so small, not because he was so swollen, but because he was not hooked up. As much as I hated these machines, I was relying on them to keep him safe, to tell us when something was wrong.

We wrapped him in neon light and placed cotton swabs over his eyes for protection. His color looked as if he'd been to Florida or like he'd been eating too many carrots. He was orange. When an attending cardiologist playfully called him Little Pumpkin Head, I answered quickly, "Please don't call him that."

Even now, years later, I avoid thinking about that day, that particular moment. It was seemingly innocent, seemingly harmless, but it was a monstrous moment. One my restless mind returns to late at night when I'm about to fall asleep or drifting passively as a passenger in a long car ride up north or rinsing conditioner out of my hair in a hot relaxing shower. Suddenly, always without warning, I hear her voice, I see her face, I feel my heart disintegrating and slipping through my ribs, slamming into what would euphemistically be called the pit of my stomach.

It was a day like all the others, except I was handling it on this day. I was okay. I was changing his diapers, pumping my milk, singing nursery rhymes and made up songs into the cold filtered air around him. I was as "at home" in this foreign place as I could be, making do with our medically provided nest. I was feeling hopeful, maybe today they would find some answers, maybe today he would gain some weight, maybe today he'd open his eyes and look at me. He was stable. And I was grateful. I was busy making work for myself, replacing bedding, rearranging chairs, folding and refolding his too large clothes.

When I walked across the room to get a new pile of diapers, there was a hustle and bustle behind me. An off duty nurse was visiting with her precocious young daughter. They were sharing the beautiful spring day together. They had been
shopping and carried bags in both hands. They were jubilant. The other nurses stopped what they were doing to say hello, to greet the proud little girl visiting her mom's work place, to chit chat. I didn't know this off duty nurse personally, but I recognized her. She had never taken care of my son, but I'd seen her many times. She was always very bubbly and very competent. She and her daughter walked over to my son's corner. They were peering into his isolet, cooing and smiling. I was the only mother present in the NICU at the time and I was on the other side of the room. She didn't know I was there.
She didn't realize I was watching her look in on my son. The little girl's hand was on the isolet and she was smiling. Her mother was looking on so intently, I was touched. I was swelling with a brand new emotion, parental pride, and it felt glorious. I started across the room towards them, towards my son's corner, towards my unprotected nest, towards what I thought was a chance to bask in this first moment of pride, when this mother, this off duty nurse, this bubbly cheerful competent woman, looked up to the other nurses and asked,

"Is this the one? Is this the Noonan's?"

She was pointing to my isolet, she was pointing at my child, she was pointing...

In that moment I was forever changed. That off duty nurse's face burned into my brain. She wasn't admiring my child, she was inspecting him, examining him, gauking at him. He wasn't a beautiful child of God to her, he was a syndrome, a spectacle, a phenomenon, something she might have read about in nursing school, but had never encountered in real life, until now.
I left the unit sick. She never knew I was there. I slipped into the Family Waiting Area hoping to suck some air back into my lungs. I still can't believe the pain I felt. I was furious and hurt and broken and indignant, and I didn't realize it at the time, but worst of all, I was ashamed. It was like a pin ball, or better yet, a spray of machine gun fire was ricocheting around inside
my chest. And I couldn't stop it. I had to move outside the pain and become an even more distant observer. And I realized then and there that what I was feeling was any everyday occurrence for thousands upon thousands of "special" parents, like me. And then I suddenly became aware of the many awkward silences we had met when we walked into examination rooms, doctor's offices, even into our own family's homes.

When I decided to have a child, I knew my life was certainly going to be new and different. Every person who brings a child into their lives, understands that on some level. But this was more than different. I was ill prepared for this.

On that day, like so many others before and after, I wept all the home in the car. I wept for my son, for myself, for my husband. I wept for a world so cruel and so clinical. I wept for my innocence lost and the fragility of my son's existence. I wept and wept, late into the night until I collapsed into an artificial sleep where I heard the off duty nurse's voice probe over and over,

"Is this the one? Is this the Noonan's?"

Almost three years later I still fight that nurse in my mind. My son is beautiful and different, he is just like the rest of us. I want the pain of my own prejudices and expectations to cease.

Thanks for listening.

The Noonan Syndrome Support Group, Inc. and any associated parties will not be held responsible for any actions readers take based on their interpretation of published or disseminated material. Please review medical treatment and decisions with your physician.