Monday, March 26, 2012

Extraordinary Siblings

I heard laughter coming over the monitor. My teenage daughter was in Cody's room. She was helping me out by getting him ready for bed. I looked at the video monitor. It showed  Cody, now dressed in Toy Story pajamas, and Hannah laughing. They were both lying on his bed. Cody was teasing Hannah by trying to take off her glasses.

Their sibling relationship isn't  typical. Cody and Hannah have never fought, bickered, tattled on one another. Cody never chased Hannah around the house with a daddy long-legged spider (like i once enjoyed doing to my older sister... love you, Lisa).

Hannah was seven when Cody was born. A few weeks before Cody's birth, Hannah and I went shopping for her baby brother. She selected a Carolina blue (shout out to UNC fans) outfit, and a stuffed rabbit to give to Cody. She was excited. We all were!!

Cody experienced a traumatic birth with a significant amount of oxygen deprivation. He was placed on a breathing tube. Several doctors were not hopeful of his survival. Hannah was with close friends and family while Scott and I were at the hospital hoping and praying for our boy. I talked with Hannah on the phone but we waited a few days before she came to the hospital. In all honesty, I was hesitant of her arrival to the  hospital because we were so uncertain of Cody's prognosis. I didn't know what to tell her. I didn't even know what to tell myself.

After a few days, Hannah was brought to the hospital.  I sat across from Hannah, face to face, on the bed.  I had rehearsed in my mind how I would explain all of the happenings in recent days to my sweet girl. Those well rehearsed words failed me. I don't recall all that was said except that we all loved her little brother and he would be in God's hands.... no matter the outcome. We hoped and prayed that Cody would pull through.

I will never forget what Hannah did next. She moved closer to me and hugged me. As we hugged, she patted my back. She had never done that before. It made me chuckle a little in that she was suddenly comforting me. She then said confidently, "Cody is going to be OK."

We then walked down to the NICU so Hannah could see her brother for the first time. She had brought the little bunny that she had bought just a few weeks earlier. We put it in the corner of his incubator. As I held Cody, she spoke sweetly to her brother as she introduced herself to him. (I admit I am tearing up a little as I type this).

Hannah and Cody
Summer 2001

I realized in that moment that what was happening wasn't just happening to Cody, myself, Scott....but to Hannah as well. Cody's birth and life has impacted all of our lives profoundly.

Hannah's initial statement that Cody would be OK has proven to be true in many ways. Even though his cerebral palsy affects him in every area of his development, Hannah and Cody have never known anything differently in what their sibling relationship should be. In many instances that are difficult and/or challenging, children  have a greater capacity to adjust. As adults,  we can over-analyze and worry instead of just enjoying the present.



I've encountered many siblings of children with disabilities and/or chronic disease/conditions. These folks are in various age groups, child thru adult, and most exhibit a great capacity of compassion and empathy for others, particularly those that go unnoticed by most in society.

Cody attended an exceptional preschool years ago for  children with and without special needs.  We met so many wonderful families during our time at Siskin Children's Institute (http://www.siskin.org/www).   I've often reflected on a conversation that I had with one of the inspiring moms that I came to know. We were discussing our concerns that we had for our children without disabilities in that much of our time was devoted to our boys with additonal needs. She then told me about a conversation she had with her lovely daughter Emma who was close to Hannah's age.

Emma had asked her mother if there was a possibility that she would have a child one day with down syndrome like her younger brother.  Concluding that her daughter was anxious about the possibility of having a child of her own with down syndrome she told her that it was unlikely. Emma's response was disappointment.  That brought tears to my eyes. Emma saw her brother as perfect!!

I've come to think of children with special needs as extraordinary. They have extraordinary siblings as well! 


Cody and Hannah in a recent candid moment.