Under The Moon

The Image Is Not Who I Am

It's 12:01 am and I just finished watching the Discovery Channel. I'm trying to compose myself as I sit to write this. I'm feeling a lot of mixed emotions: anger, disgust, and sadness. I can barely see the screen for my tears, tears for a four year old boy named Michael who has Downs Syndrome. My husband, Jeff, could not even finish watching the program about Michael, so he slipped into our bedroom as I sat in our big over sized chair and jotted some of what I was feeling into a notebook. The title escapes me for now, but I'm sure of you go the Discovery Channel website you will be able to locate it.

By now you may be wondering what has me so angry and sad. Michael's parents elected to have his face changed so he would not appear to have down syndrome at the age of four years old. I was horrified as I listened to these two seemingly intelligent parents talked about the appearance of their child. They wanted a "normal" looking child that looked like his siblings, they wanted to go out into public and not have people stare, and they wanted to look at this child and see a "normal face".

Michael was a beautiful, happy child who happen to have downs syndrome. Yes, he had physical characteristics of a child with his disabilities but he was still beautiful. His parents didn't think so. The image of his face didn't suit them so they set out to change his face. They went to a plastic surgeon who encouraged them and told them that by "fixing" Michael's face he would appear to be normal and would be made fun of less. At the physicians office they showed a computer enhanced image of what four year old Michael's face could look like. The father exclaimed, "He'll look just like my baby pictures" when they showed the final image on the screen. Not long after that, four year old Michael was in a operating room having a surgery to change the appearance of his face.

For three hours, little Michael, who behaved and acted more like an eighteen month old child, laid on a operating table having his face cut open. He had lyposuction around his eyes, cheeks and neck.They gave him cheek bones with synthetic materials and added cartilage to his nose to make it look more like his mother's, and they changed the shape and position of his eyes. After surgery, this child laid in recovery looking more like a child in a terrible accident than something his parent's elected to do. His face was bloody, his eyes bandaged, and his head was wrapped like a mummy's with a small opening for his mouth. The child moaned and cried in pain, struggling against the restraints that bound him. I was moved to the point of tears and actually had to look away.

How could a parent elect to do this to their child? Why would a parent do this to their child? The questions kept running through my head, and a wave of nausea came over me. Is our outward appearance so god damn important that parents are willing to have their children's faces altered at a young age because they do not look normal? What benefit is this child really going to receive from having his face altered? I don't believe he will receive much benefit from it, but his parents may. They wanted a normal child and when they didn't get one they choose to at least make his outward appearance look as if he was normal. Something is wrong when a parent wants to change their child's face to fit their needs and remove some of their insecurities.

When the parents of little Michael walked into the recovery room, the look on their faces were not happy ones. They looked distraught at the appearance of their child and the mother acted agitated. Immediately I sensed that the father was regretting their decision. He didn't speak but the look of horror on his face said it all. The mother rocked the child as he moaned and cried, his bloody cheek laid against her breast as she sang to him lullabies. And as I watch this unfold, I wondered if this child knew that his parents had done this to him, that they were the ones behind his pain and suffering. He could not see, he could not breathe out of his nose, and he could not move. There is no way to imagine what that child was feeling physically and emotionally. The doctor came in and talked to the parents while Michael was in recovery, his exact words were " he looks worse than what he feels". In my heart I hoped that he was telling the truth, but my head told me differently.

Months later, Michael still looks like he has down syndrome. He does look different, but I wouldn't exactly call his appearance "normal". His parents look for reassurance to their peers and family that they made the right decision. They even go to visit another family who had a similar surgery done to their child with downs syndrome to help "them" feel better about the choice they made. It's apparent that each set of parents are looking to normalize their children who will never be normal.  Michael's mother offers an excuse towards the end of the program for what they did to their child, "if society wouldn't make fun of people who are different then we wouldn't have had to make this decision." What she doesn't realize is that she has fallen into the image trap, and that because of her own insecurities and fears she and her husband decided to alter their child's face.

I can't help but wonder if this will become a new trend among parents. When parents look at their children will they now see the beautiful child they gave birth to, or will they be looking to see what they can fix because it is not exactly like they pictured it. If you are familiar with me or my journal you know that my child has a noticeable cosmetic birth defect. Elizabeth has polydactyly of the thumb, Wassal Type I. Her right thumb is doubled and instead of looking like a normal digit it looks more like a claw. It is noticeable, but the function of her hand is normal. People ask questions about it, out of curiosity not cruelty. I'm sure that once she starts school she may get made fun of and teased over her hand.

After she was born I must admit I was concerned that she wasn't normal, even though she was beautiful, happy and healthy. When she nursed and her hand rested on my breast I would look down at her hand and wonder why she was born this way. There were no answers, this is what the gods had given me, and even though outwardly her appearance wasn't exactly what I expected, this was a part if who she was. When she was six months old we were told that we could have her hand corrected when she was eighteen months to two years old. We were also told that the surgery was strictly cosmetic, and that the function of her hand was normal. As soon as we got home from the specialist I was on the internet researching the procedure(s) to correct her hand and the risks involved putting a child under anastesia. After reading all the facts the decision my husband and I made was really quite easy. The risk was not worth correcting a cosmetic defect just because along the way someone may stare at her or make fun of her. Her hand is a part of who she is and when she is older if she wants to have it corrected we will support her decision to do so.

We've been criticized for the decision we have made on several occasions, but I feel secure in our decision. Sometimes there is a need to correct imperfections, like cleft palate or other deformities, when the positives from cosmetic or corrective surgery out weigh the risk and benefit the child. Michael was born with downs syndrome, he will always have downs syndrome, changing the appearance of his face will not change that fact or change who he is. Maybe the image of his face will make his parents feel better, or others around him, but this will not change who he is.

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