11/23/17
In the darkness of Ethan’s nursery, I gently walked around, trying to lull him to sleep. The light from the lamppost across the street shone through the linen window drapes, bathing the room in a gentle light.
The Thanksgiving guests had long since left. The house was dark. The door to our bedroom was half open, and I could hear Buffy sleeping, as Ethan continued to fuss in my arms. Refusing to settle down in my lap on the rocking chair, I stood up and danced slowly around the room. I had learned through the first couple weeks of Ethan’s life that like Ollie, my first son, he preferred that I stay on my feet as I put him to sleep.
As I began walking around the room, my thoughts left the exhaustion from the long day of Thanksgiving, to the challenges of the next day. Then for the first time in Ethan’s life, his presence brought a song to my heart.
I pulled my iPhone out a my pocket, and soon a wash of synthesized chords filled the room, followed by the mournful singing, “It’s been seven hours and fifteen days.”
Sinead O’Connor’s, unforgettable version of Prince’s torch song “Nothing Compares 2 U,” brought together everything that I wanted to feel about my son, and the feelings I was afraid to acknowledge.
Like other parents, many of which are dads, I did not immediately feel a connection to Ethan. While I worked hard for Ethan, and cuddled and hugged him, I didn’t feel that bond deep in my heart, until that moment. Facing the harsh realities of the coming day, in that moment, love overwhelmed me, and his bright eyes looked up to me hopefully. As my love grew, I held him tighter, and my sadness grew. I felt Diana walk in behind me, and give me a hug. I pulled myself together, feeling Diana smile. She wasn’t showing any sadness, so I wasn't going to either.
That was the moment when I felt bonded with my second son, when I felt deep love for him, in the face of a reality that I was afraid to let myself admit.
*****
I knew something was wrong the first time I saw Ethan. The shape of his right ear, and the skin tags on his cheeks, gave me the feeling that something was off. I ignored this feeling focusing on everything else that was perfect about my little boy, and everything else was perfect about Ethan.
As Ethan grew, I tried to not let the fact about his ear sour my positive feelings. We learned early that ear tags were sometimes a sign of hearing loss. However, his weight gain was great so I focused on that. When Ethan failed a hearing test on his right ear the first time, I smiled at the nurse’s optimism, when she said that he would probably pass the retest. When he failed the test again, and the pediatrician explained another a need for another round of tests, a month later that she thought he would pass, I focused my mind on how great it was going to be when we got home.
The worst case scenario logically wasn’t that bad. Most people with unilateral hearing loss (only hearing through one ear), live full lives. Most people who have severe hearing loss in both ears live fulfilling lives. I’ve taught students with different kinds of hearing loss and all of them were just fine in the classroom, had friends and lived full lives. My logical part of my brain told me that things would be okay, Ethan would be okay. So with chosen optimism and the thought that this wasn’t that bad, and not that big a deal, I told people close to me about Ethan’s condition.
This forced optimism about Ethan came from the fact that he had the best of a bad situation at every turn. He failed two hearing tests on his right ear, but his left ear was great. The plastic surgeon told us that while he had constricted ear microtia, there were no signs of this effecting his jaw, and plastic surgery later in life would not be difficult. When he went in for more hearing tests the day after Thanksgiving, we found out that while his right ear had moderate to severe hearing loss, his hearing nerve responded normally. They were able to differentiate hearing nerve reaction from the ear canal, and through bone conduction. Ethan failed with hearing nerve activity through the canal but not the bone.
At every turn Ethan had the best of each situation. So how could I be sad about this? We were presented over and over with the fact that Ethan had good points to the results of every single test he took. While this made me feel better in the short run, it covered up only for a little bit of time the reality that the fact that Ethan had a disability that even in the best of circumstances was sad.
The logical part of my brain was working overdrive. I kept telling myself that only having hearing in one ear was fine. I had just read an article about Millie Bobby Brown (actress who plays Eleven on Stranger Things) being deaf in one ear like Ethan. Look at how great she was doing, so of course Ethan was going to be fine.
This distance from the sadness left unprocessed, created a space between me and Ethan. It was a space that made me feel it was okay to mix his name up with his older brother’s (or the dog’s name). It was a feeling of not wanting to sing to him when I rocked him to bed, and struggling to come up with cute nicknames for him.
Something about Thanksgiving, and knowing in my heart that the tests the next day would confirm my fears, finally forced me to face the reality of the situation, the sadness of Ethan’s hearing loss, and my love and devotion for my second son.
It’s in the moment of loss and sadness that we often feel love the deepest. When Buffy was bitten (read about this situation in this post), and I feared that I would lose her, I felt a deeper love for her than ever before. I was overcome by love when I saw Diana walk down the aisle during our wedding. However, I felt something stronger in my heart when Diana was stranded in a New York airport baggage claim overnight and I spent the night unable to sleep worrying about her.
When I allowed myself to feel the emotions in “Northing Compares 2 U,” the sadness I was holding back for Ethan finally came out and in that sadness, I felt the love, and the bond for my son. For the first time I sang to him, and when I kissed him on the forehead and told him that I loved him, I had tears in my eyes.
I am sad that Ethan will have challenges that I do not. I’m afraid that what I don’t know or don't understand about Ethan’s condition will lead me to not do right by him. And I fear the moments when I will be at a loss to help Ethan understand the hand that he has been dealt, as he learns to love himself.
I know my feelings about this part of Ethan’s identity will evolve. Now that I have entered a place that I can be sad about it, I know my journey of true understanding and acceptance will start. There are times when logic, optimism, and platitudes are what we need the most. Right now, I need to be sad for my son, live in this feeling and embrace the love that comes along with this sadness. I know that for Ethan, I will be a better dad helping him through his own sadness related to his disability, having learned from my own journey through these feelings.
“Cause nothing compares, nothing compares 2 U.”
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