My brother’s clefts: When birth defects aren’t defects-Compete & Cooperate

A Disability, or Not?

By Barbara Schonborn

I didn’t think my brother Karl had . Nor did I think his and were disabilities. When we were children, Karl was just my competitor or my buddy.

Guest blogger, Barbara, with Karl.

Guest blogger, Barbara, with Karl.

Brother with no birth defects completes the family.

Steven, my second brother, was born when our family lived next door to our grandparents Schonborn in a rural neighborhood of Puyallup, Washington. Steven had no birth defects. His nose and mouth were normal, and he learned words quickly, with his chatty sister and brother as rookie teachers. Steven had charm from a young age and wasn’t burdened with a complex familial role as I was.

Welcoming baby Steven—w/o birth defects.

Welcoming baby Steven—w/o birth defects.

My early role evolved into one of alternately sparring with and protecting Karl. (I mostly protected Steven.) I chose both to nurture and protect my brothers without prompting. But, Karl’s and my typical sibling arguments and battles for attention and space—“Mom, Karl’s on my side of the car!”—used a lot of my childish energy. I imagine that’s why I slept soundly almost every night. 

When Karl was in kindergarten at Maplewood School, he got speech therapy from a specialist. At dinnertime, Karl told us about the things he did. He blew feathers across a table top—not too hard. He blew up balloons—very hard for him. These sounded like fun to me. But I didn’t have a malformed nose and mouth.

I recall seeing a tall ladder attached to a wall in the school cafeteria. I understood that the ladder led to Doctor B’s office, where Karl practiced breathing and speaking. Climbing that ladder seemed scary and exciting. I had no idea how hard Karl worked in the little room at the top.

Competition.

One afternoon, Karl and I were excused from our grandparents’ Sunday dinner table. We raced each other to the bathroom. I won and sat on the toilet After dancing desperately in front of me awhile, Karl opened his pants and peed on me. Our parents sided with him: “He’s younger and smaller than you.” Humph! My need was as great as his.

As kids, we fought mock battles, featuring the satisfying pounding of each other’s upper back with the palm of a hand. We wrestled until a hold of Karl’s caused me pain, and I cried foul.

At our family meals, Steven sat calmly at one end of the rectangular dining table, flanked by our parents on the sides. Karl and I faced each other across the table, each of us sitting next to a parent. When Karl and I laughed at a joke, any milk he had in his mouth dribbled out his nose. This sight made me laugh harder. He laughed, too, but he might have been embarrassed.

A Bully on the Block.   

Our family moved to Palo Alto, California, the year I turned ten; Karl, eight; and Steven, four. In the following spring, we moved from a rented house to our own, new house, with a different elementary school. I transferred to the new school; Karl finished the school year at the school near our rented house.

One day Karl and I walked around the corner to the new school playground. We encountered C, a fifth-grade classmate of mine, and her brother, who was Karl’s age. Both kids were tall for their age, and we were short. I have a visceral memory of the four of us loitering near a tetherball pole.

The boy said something derogatory about Karl—his asymmetrical nose and mouth, his nasal speech, his small size. I defended Karl. We four concluded our tense discussion peaceably, but the experience of unexpected insults and retorts stayed with me.

Revelations.

I didn’t learn until Karl was writing his memoir, Cleft Heart: Chasing Normal, that C’s brother and another male classmate often bullied Karl during his elementary and middles school years. Karl didn’t talk with me about his emotional and physical pain, and our parents shielded me from what he went through.

Decades later, I’m grateful that I didn’t know; in our youth, kids had few tools to defend against bullies. Karl’s memoir recounts his well-planned, successful retaliation against these two boys—I cheered when I read it!

When we were children I noticed the asymmetry in Karl’s face only rarely, when we happened to look into a mirror together. His reflection was the reverse of what I saw when facing him. In the unaccustomed mirror image, I saw Karl’s smaller left nostril and the thin scar line that ran from his left nostril to his upper lip.

Steven, Barbara, Karl — college years.

Steven, Barbara, Karl — college years.

Well into adulthood, Karl endured more surgeries, which corrected these external asymmetries and improved the internal structures of his nose and mouth. In addition, he wears a mustache now!

When Karl said he was writing a memoir, I asked for a summary of it. He told me his theme: a beautiful young mother cares for her child with a disfigured face. The child becomes a success, but the mother pays a price.

Puzzling about Karl, Steven, and me, I asked, “Who has the birth defects?”

“I do,” he replied.

I had not thought of Karl as a person with birth defects or disabilities. On reflection, I have as many disabilities as Karl. Mine showed their faces in other ways. Through all our years together, I’ve considered Karl to be my smart, talkative, questioning, sometimes annoying, always beloved brother and friend.

BARBARA’S BIO.

Barbara Schonborn and Karl both chose to be educators as their life’s work. She also has written and edited training materials and other texts in high-tech businesses. In Karl’s memoir below, Barbara’s name is Gayle.

Go here for more family pics.  

Brother & Mother of Guest Blogger on cover of Cleft Heart..

Brother & mother of guest Blogger.

 

And go here for excerpts from the book. You can order at the excerpts site or use the right sidebar buttons for Amazon or Barnes & Noble. 

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