I Was Scared of My Newborn Son
I have always been socially respectful to people with mental and physical disabilities, particularly children. It's the way my sister and I were brought up.
We grew up knowing that a wheelchair didn't limit someone's potential, that blindness wasn't a road block to success. I remember watching The Miracle Worker at a young age, in awe of Helen Keller's determination.
I grew up in a household that taught me people were people; they were not their disabilities. I embraced that.
Or, I thought I did.
On April 28, 2014, I gave birth to my second child: a son, Jackson Samuel. We had already been told Jackson had only one functioning kidney, but had been reassured that it was keeping up with the workload, no problem. Everything else seemed to be perfect, we were told.
They were wrong.
Jack was actually born with several anomalies, the extent of which we wouldn't know until we began our ongoing stay–seven weeks, so far–in the NICU. From heart problems to excessive breathing, a hernia-like opening to a slightly bent airway, an immature 7th cranial nerve and the need for a feeding tube due to him aspirating his feeds … from head to toe, it seemed Jack had an abnormality in every body system.
He also had a right hand deformity.
When the doctors popped him over the sheet during my emergency c-section, my tears of joy were the only sound in the room. No one made any mention of his hand at that point.
Nor did they mention it at any point during my three day stay. They glossed over it, as if it didn't exist. My OB disappeared after my surgery quicker than I could blink, and the nurse had to point it out to the on-call pediatrician after his cursory once-over. He basically shrugged his shoulders, and mumbled, “Nothing to be done.”
My husband and I were in shock. The usual happiness that comes after a birth was lost, sucked out of the room. My incessant updates on social media came to a halt. For days, people would text me and message me for an update, because I had literally fallen off the digital planet.
I didn't know what to say. I didn't understand my son. I didn't want to understand my son. At that point, all I wanted was to go back in time, and prevent my pregnancy from ever happening.
I faked a smile through the initial pictures, and faked it through the first few days at home, while I silently cried my eyes out between nighttime feeds.
I couldn't bear to look at his hand. I cropped it out of photos when I finally updated my virtual life. I was irrationally afraid to touch it, having to force myself. I couldn't be that mom– the mom that makes her own son ashamed of his disability.
Twelve days after he was born, his other conditions began to make themselves known, and after rushing him to the ER, he was medically evacuated to a children's hospital two hours from the military base my husband was stationed at.
It was there that I overcame my fear. While Jackson's situation was certainly scary, and still is, with a diagnosis of VACTERL Association, I was surrounded by babies whose prognosis was so much more fragile than his. There were parents literally just waiting for their children to pass away, because there was nothing medically to be done to fix an extra chromosome.
For seven weeks, my husband and I have lived at the hospital, switching off every 24 hours to spend time with our 2-year-old daughter. At night, while he slept, I would examine his small hand, looking at it from every angle.
I was afraid of him at first, and I rejected him because I wasn't expecting to have to learn to accept him. It was easy to accept strangers: I didn't hold any expectations for them, like I did for my own children. When I was confronted with a change from the “normal” I was expecting, I turned away.
Watching him fight to survive his other more medically serious problems put his hand in perspective. I loved that hand– it was benign; it couldn't hurt him.
It became beautiful.
It was beautiful, because it was Jackson. It's who he was. It's who he is.
Later on, down the road, he will question his hand. Perhaps he'll be angry, or confused, or sad, or ashamed. I'll be able to tell him with absolute certainty that his hand does not define him, and anyone that can't see past his hand doesn't deserve to know him.
I love every tiny inch of my 8-week-old son. I want to know him.