Wednesday, October 26, 2011

She Has Down Syndrome

“You know that book I just read?” Andy asked sitting at the foot of my hospital bed.

“The Henri Nouwen book?” I replied, “What is it called?”

“Return of the Prodigal Son.” 

“Yes… I remember.” I looked down at Nichole who was sleeping in my arms. Her rhythmic breathing against my chest reminding me she had been inside my body that morning. “Why do you ask?”

“I think God used that book to prepare me for Nichole. For her having Down syndrome.”

 Andy had been talking about this book for the last few months. Henri Nouwen, a priest, had felt God’s call to join L”Arche; a community for people with developmental disabilities. It was in that place, and with those people, that God spoke to Nouwen about his brokenness. The lessons he learned, and the pages of his book, had challenged my husband. The last few months Andy had been on a journey of returning to the “Father” as a prodigal son, much like Nouwen. These outwardly “broken” people had confronted his own broken places.

I swallowed a hint of resentment. It’s bitter taste lingering for a moment. I wanted to shake my fist at God and ask him why He had given me a broken baby. Somehow, I wanted Andy to feel that too. It seemed unfair that he had something to grab on to. Unfair that he held a sense of stability while I was losing my balance in the tight rope of life. No safety net to catch me. 

Eyes still fixed on Nichole, I stroked her back gently. Afraid to make eye contact with my husband. Afraid he would see that I was about to fall.

Andy ended the momentary silence.

“I will call my parents and let them know.”

I busted my intent look on Nichole, “What will you say to them?”

“I don’t know.” He paused for a moment, “I guess I will just tell them that Nichole has Down syndrome.”

Andy had called our parents during the excitement of the morning. He gave the details pertaining the labor, weight, and time of birth.  He shared with them too, that he had been surprised by joy. It did not seem fair that he had to call back…”by the way, your granddaughter has Down syndrome.” I felt cynical.

Andy stood from the foot of the bed. He took a deep breath and walked across the room towards the large windows that spanned across the far wall. He pulled the black flip-phone out of his jeans pocket. I looked down at Nichole once more and willed myself to listen to her steady breathing. 

His parents offered their understanding and the reassurance that Nichole was precious and loved.
My mom and dad, on the other hand, would have to wait for the news. I was not ready to tell people. I was not ready to make that call. 

My mom would be coming the following morning. I would tell her then. I needed time to gather my thoughts. I wanted to own the words I would use when I delivered the news. I was afraid. Afraid of the stigmas of our Mexican culture. Afraid because my mom looked away from people with disabilities. Afraid that she too, would see Nichole as broken. 


I hated the fact that my baby was not perfect. I hated the fact that I felt that way.

Andy pulled out the couch and began making the bed. The dark blue sheets contrasting the white institutionalized sheets on my bed. The same bed where I had given birth that morning. An IV still attached to my arm and a broken baby sleeping in my arms.

I don’t make mistakes.

Then why. Why did it feel like it was a mistake?

Andy came to my bed and reached out his arms. I handed Nichole to him and he gently kissed her on her forehead. He walked towards the bed and laid down, with Nichole resting peacefully on his chest. He reached out for the remote control and turned the television on.

“What do you want to watch?” he asked.

“Anything. I really don’t care.”

The noise of a game show filled the room, sending me into a trance. The physical and emotional exhaustion of the day taking over. And somehow, it was morning.

I would call my dad first. He always took things better.

“Dad” I said, “Nichole has Down syndrome.”

There was a pause and I heard a deep sigh. “You know sweetheart.” he gently replied “If you had to choose a disability for any of your children; you would want it to be Down syndrome.”

My dad worked as an interpreter for several Children’s Hospitals. I knew he had seen and interacted with hundreds of children with special needs.

“I don’t know what it is” he continued, “but the connection I see between these parents and their children is uncommon. It is touching. It makes me wonder what it is they have that other people don’t. And they feel so lucky, so lucky to have their children.”

His words touched me. I was struggling to feel connected to Nichole. Every time, as our matching bracelets would reunite I whispered, “we belong together.” It was another reminder that I needed this to be true. It was a morsel of hope.

My mother arrived at the hospital mid-morning, ready to meet her new granddaughter. She smiled and awed at how beautiful Nichole was. She took her from my arms and settled in the rocking chair by my bed while Andy took a break and went for a walk. She rocked my baby, back and forth.

I wanted to tell her that God had picked us for a reason. To tell her that somehow this was part of God’s plan. I wanted to justify how it was okay that my child had special needs. 

I sat at the edge of the bed, watching them. Watching my mom, her expression. 

“She has Down syndrome.” I blurted out.

My mom continued to look at Nichole, continued to rock, same smile on her face.

“I know,” she said.

She knew. And nothing changed. I watched them, rocking together. Grandmother and child.

“Take a picture of us will you?” she asked, “I want to remember the day that God sent a little baby girl to change our lives.”

My mother and this relationship we had. So tested, yet so strong. More than anyone else, I cared about what she thought. Maybe because I knew I was so much like her. Maybe because if I saw strength in her, I knew I could be strong too.

Next: Nursing

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  1. 1. LOVE the new layout.

    2. You look EXACTLY like your mom!

    3. I should not read these at work because now I am crying at my desk.

    4. I love you, friend

  2. I keep crying as I read about your journey. Great writing. And great sharing of your heart.

  3. Oh my word. Tears here. Such strength and beauty.


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