You'll find hundreds of files on cleft lip, cleft palate here on widesmiles.org.
This one is about: Face To Face With the Moment of Truth
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FACE TO FACE WITH THE MOMENT OF TRUTH
by Joanne Green
It happened. The moment we all know will come, but pray never does. It comes. And as ready as I always thought I would be, I didn't feel ready at the time. My beautiful son came face-to-face with his own different-ness, and I knew that my response to his pain would contribute to the ultimate shape of his self image.
I was in the downstairs family room when my 4-year-old Joey came running in to find me. He had been playing with the 6-year-old from next door. My sons and he had been friends since they were all babies and they played together daily. But on that day Reuban's cousin was visiting. They played together so well, I never gave much thought to their interactions. But suddenly Joey felt the need to come running to me.
"Mommy," he said, "You know what Reuban said?"
"No, son, What did Reuban say?"
"He said I got hit by a car." was the answer.
I looked up. "Why would he say that?" I asked him.
Joey rubbed his pudgy finger across the scars on his upper lip. "He said I got hit by a car and did this."
Three of my children were born with clefts. 'Cleft talk' has been a part of our family life for a number of years. It never dawned on me that a child we've known for as long as we've had our children would not know what caused the scars on my son's lip.
"Well," I said, "Tell him you didn't get hit by a car. Tell him you had a cleft." And I turned back to my cleaning.
There was silence for a moment. Then Joey spoke again. "You tell him, Mommy."
I looked up at my son. His eyes were filling with tears as he looked up at me, begging me to somehow 'make it right'. My heart broke for him. All at once he realized that he looks different, and that his friend did not understand why.
Joey was always my 'tough little cookie'. He was always just Joey - what you see is what you get. He never seemed to take notice of anyone staring at him. He never cared that they asked rude and intrusive questions. I always had found strength in the knowledge that one thing was sure - Joey had a strong and healthy sense of himself. But suddenly that sense of himself was jeopardized, and he wanted me to fix it.
I started up the stairs and then stopped. How would I handle this? Reuban wasn't being mean exactly. He just didn't know something and was making up his own explanations. I went back downstairs and grabbed Joey's baby album. Armed with visual aids, I went out to meet with the kids. Reuban and his cousin were sitting on their porch. I walked up to the two and sat down. "I want to show you guys something." I said, and then I prayed that the way I chose to handle this would be good for Joey.
"Joey told me that you think he was hit by a car, and that's how he got the scars on his lip." I started. "Well, that's not how it happened.
"When Joey was born he had a 'Cleft Lip and Palate'. Do you know what that means? It means that Joey was born with a hole in his lip, and in the top of his mouth." I opened the album and showed Reuban Joey's baby pictures. "See how his lip looked like it was broken? That's the way it looked when he was born. Nothing happened to break it. It just didn't grow together when it was supposed to.
"I want to tell you about this because I want you to know that the only thing that was wrong with Joey is that he had a hole in his mouth, and the doctor could fix that. It looks a little different, but it's really not.
"Do you think that having a hole in your lip makes you a bad person? Of course not. Do your think it makes you stupid? No, that would be silly. It only means that you have to have an operation to close the hole."
I turned to the pictures of Joey that were taken following his surgery. "See, this is what Joey's lip looked like right after the doctor closed the hole. See how much it looks like a regular lip? An operation is a big cut that the doctor makes, and any time you get a big cut you get a scar. That's why Joey has the scars on his lip - because the doctor had to make a big cut in order to close the hole in his lip."
I turned more pages and we looked at more pictures. Sometimes I commented on them. Reuban and his cousin watched with rapt attention. At last I closed the album and asked the two kids if they had any questions.
Reuban wanted to know if Joey's lip hurt when it was cleft. Joey answered that he didn't remember, but he didn't think so. I said, "Remember that Joey was born with the cleft, and that it wasn't broken so much as it just never grew together in the first place. It didn't hurt him because to him it was normal. What hurts, though, are the operations. Operations hurt a lot when they are first done, but that hurt goes away." Then Reuban wanted to know how it happened. "We don't know exactly how it happened, but one thing we do know for sure - it didn't happen because of anything Joey did wrong. In fact, nobody did anything wrong. It just happened."
I addressed a few more of their questions and then underscored that a cleft in the lip doesn't make Joey any different from other kids, except that it was a little harder to learn to talk, and he used a special bottle to drink milk. Aside from that, he was just fine. He needed some operations and will be having more operations until his mouth and nose look almost perfect.
With that, I kissed Joey on his not-so-perfect nose and sent the boys off to play as I walked back toward my front porch. Looking back on the scene in my neighbor's yard, I saw that the kids were happy and playing as usual. Joey looked up and saw me watching him. He flashed his beautiful wide smile and gave me the "I love you" sign before he turned back to play with his friends. All was right in his world again.
Of course, I worry, as any mother would, about the next time, and the time after that, that his sense of self is questioned. This time we gave them answers and accurate information. As it turned out, Reuban and his cousin were not laughing at my sons. They simply didn't know, and in their ignorance, they tried to make sense. Maybe I did, and maybe I didn't help them to understand differences in others. What I am most concerned about is that somehow I helped Joey to understand the differences in himself.
------------------------------------Joanne Green is the mother of three cleft-affected children. She is also the Editor of WIDE SMILES Magazine.