A Cleft Idea

The child who wished to star but ends up being starred at. Those are many, and, of course, c’est moi-même. One and the other complement each other, right? Right? Well, they don’t. When I was really young, and people, especially other children, would stare at me, I would ask myself “why are they always staring?”, when I went to school (of kindergarten, or even nursery school) and I realized something was different, I knew what it was. From then on, I’ve developed the “lookdar” or “staredar”, that is, I know if a person is looking at me for whatever reason, or if it is because of my scars and “different” upper lip. Some folks say it’s only in my mind, or that it’s a false impression I created. No. I know. Sometimes, in the bottom of my malicious being I think, “imagine they looking at me if I had been born in the 19th Century, or 20th Century Third World, and would have never had a surgery. They would scream with fear! Ignorants!” 

But all this staring came with harms. Many harms. My subconscious is always telling me people are looking at me, talking about me, or laughing at me, even when they’re not. Today I was having a Focaccia and this young couple, barely out of their teen years, was laughing and they looked at me, and I was almost sure they were laughing at me. Were they? Probably not, maybe yes. And what if they were? Rationally, I don’t give a shit, emotionally I give the biggest shit a cow has never given. And believe me, I find myself all but very important. The thing is, I always think I’m being mocked or pitied - two terrible things. I feel I am discoordinated, almost, at doing things. If I let something fall to the ground, let’s say a book, and people look back, it’s like there are two looks all at once: for the fact of me letting the book fall, and for the fact it was me who left it fall. All of this does not make any sense, I know, but I don’t make sense of it, I feel it. Two very different things, and yet totally able to be mixed into a dough.

My level of self-awareness, self-consciousness, and self-image is such, that when I decided at the age of 10 I wanted to be an actress I was always too ashamed of doing it. So I never tried. My bedroom was stage to many plays…Shakespeare would have been proud… Not because I thought I would be bad, I thought I would be great, since in my mind since I was a kid (and I was a kid that never was) I imagined being someone else, in order not to feel, and to feel I was someone else - a normal someone. I simply felt people would never see a character, or an actress, but a mouth with a cleft lip. When people ask me what I do for a living, I am and will be able to say whatever I do to make a living. But if someone asks me what I am, I will always have the word “actress” at the tip of my tongue, but I will never say it - and now I surely suck at it.

I was told once I see myself as two things: a person and a cleft. I am clefted by my cleft lip (as if it was still around the same way it was when I was born). Or in other words, just like people dress up like chickens or hot dogs to earn a couple of dollars to buy their dates a ring, I dress up the cleft lip costume by force. I have lived like a giant cleft lip at the entrance of the shopping mall. And what would you do if you saw one? You would stare. Come on, who do you think you’re staring at?

BUT, two weeks and a half ago in New York, a tourist (and I know it was a tourist because even her ass must have had “tourist” written on it), looked at me with pity. I’m not joking, I was walking up, and she was walking down with her two children (and if I was like her I would pity them, because they were her children and they were overweight, but since I was pretty chubby when I was a kid, why would I do that?!), when she looked at me, pressed her lips, slightly shook her head in disapproval, made sad eyes, and PITIED. I felt so bad, I needed a cold shower to get back to my senses, and a lager from Heartland Brewery to forget it. One may feel sorry, but pity is the last thing this condition has allowed other people to feel towards me. You can even pity the situation, but me? No way. 

Now, attention!! For this I have a type of solution. I tried it once or twice (yeah, I know), but it works. Your child tells you, “Mommy/Daddy, that girl/boy/stupid adult can’t stop looking at me?” (and there’s also a chance your child won’t say anything but you’ll notice she/he won’t turn her/his head to one specific side - that’s because that’s from where the other is staring - see the signs!), you simply say “look back and stare! Stare as fiercely as you’re being stared at”. The other will feel so ashamed and put in his right place, your kid will be free for the rest of the meal, or at least for 15 minutes. When they get a little older, tell them to ask, “what are you looking at?”. Your child will feel nervous, before and during the asking, but he/she will feel amazing afterwards. Now, you may feel sorry for the other kid, who turns out being just a kid. Well, now look. Childhood is when you are given the basis and basics for adulthood. And kids are mean. If you don’t teach a child how to fight, and to be put in his right place as a child, you can’t blame the teenager or the adult for being messed up. You’ll be teaching your child to stand up for himself/herself and the other that people have feelings. Because in life you have to face things, even your own face. 

Note: there’s also those sweet kids, you listen to whispering to their parents “what happened to that girl or boy?”, or will come up to you and ask directly, “what happened to you?”. Those are the most well-educated, and your kid’s friends. They want to know before mocking, pitying or staring. That’s why I always say, at the same time you teach your child how to say “dog”, and the colors, and the name of every family member, tell them that not everyone looks like them, and when in doubt ask, never stare or mock. If they want to do so, let them watch a cartoon or go to the circus - although I think museums are great staring spots. 

Okay, here is the question everyone asks at some point in their lives. And children born with cleft lip and palate will ask it millions of time. They’ll ask it to you, to themselves, and basically no one else. They’ll ask it each time they spot a mirror, in their bathroom, in a restaurant’s restroom, or when they enter the always self-esteem check out point: the fitting-room. It’ll get worse if they have perfectly lipped siblings. In the latter case there is some kind of jealousy (of which I suffered, because my only - big - brother has a very sweet mouth), but think of it from the perspective of a child: why is my brother or sister “normal” and I’m not? What did I do? And, well, the biggest cliché in the history of self-questioning: why me?

My biggest “why me” moments were when drying my hair after my pre-dinner bath, after school. I’d look to my mom and say “Mom, why do I have this?”, in a very normal, next-door-kind-of-voice. Then I became older, and it started containing tears, then it progressed to sobs, and so on, until this. To tell you the truth, I don’t have a great advice or answer to give, or a great solution you can use to give your child. Because, my parents didn’t know why me, and they probably (probably? Certainly!) asked themselves that same question millions of times, in two different forms: “why her?”, and “why us?” 

The best advice I can give is, treat the question normally, and give a correspondent answer, by saying, you don’t know. Because you don’t! Don’t say it was faith, or God’s will, or whatever. Your child already feels cheated, he or she doesn’t need to feel any more betrayed. Tell them sometimes people are born different, and that doesn’t make them worse, or uglier, just different, and that being different is normal, because no one is the same as anyone else - then give an example, relate two friends of yours, or even cartoons…be creative - always remember imagination is a child’s sanctuary, and for your child it is more than that. 

However, there is something I can say that you should NEVER EVER say: “there are people with worse problems in the world.” We know it is true, but for your child her/his problem is the biggest in the entire planet: it’s theirs. By saying such a thing it will feel like you are brushing off their pain (I know this first hand). It is their lives, and even if the world is falling apart, they need themselves first. It’s their pain. Try to erase the pain, but not the fact, because it will always be there. It is a matter of learning to live with it, not to live with it plus everyone else’s worse issues. And at this point I am still learning…to live with it.

I know I will never be able to tell my child she’s beautiful.

I read this about five years ago online, in some kind of forum, and it offended me so, so much, I actually responded. I don’t remember what exactly, but it was a rant. If the mother is the first to tell her little girl she is ugly, by the simple fact she has a couple of scars, I can’t even imagine the perspective the girl will have of herself when she’s a woman.

Tell your child (s)he is beautiful every day, because the world will tell her(him) the contrary every.single.day. I had adults telling me I was ugly when I was five, right in the middle of the street. Or people I didn’t know holding my face between their hands, looking directly into my mouth and saying “you’ll see, you’ll turn out to be a pretty woman.” Holy cow! Make your child feel special in a way that makes her feel normal. That’s what your child wants to be and feel like. Her first dream is not being a Victoria Secret model, it’s being normal. And his dream is not being Brad Pitt, but the regular guy. Besides, what does having a cleft have anything to do with being beautiful or not, in the first place? There are ugly children with the most perfects of lips. Yes, some children are ugly. Ditto. That’s reality. And it doesn’t really matter. Isn’t being a good and strong person - the whole “beautiful on the inside” - the most important thing, after all? Yes, it is. But for your child self-image is always in some corner of his or her mind. It came along with the finger print. 

When I tell you to make your child feel special and beautiful, it is not in the sense he or she is above anyone else! Never! But in the sense that she or he is just as worth as any kid on the playground. I had to fight my mouth, before I could fight about who had the best toy, sneakers, backpack or Disney VHS. Normalcy was the dream. And while emotionally I still feel I’m the ugliest child on the playground, rationally I know there were plenty of uglier children over there mocking me. However, this is not important. Just tell your kid how beautiful he or she is every.single.day. 

This is the second time I try creating this blog. I don’t want it to become too personal, or to send me back to some dark places this condition has caused me to visit. On the other hand, I think it is right, as a former child and now young adult who was born with bilateral cleft lip and palate to give some insight, especially to the new parents or already parents of children with some sort of cleft. We know this does not have to be a nightmare, but it will never be an up in the clouds dream. 

When I came around, I was responsible for three shocks: I had big eyes, which were already open to face the reality in front of me; I was the only girl; and I had an unknown cleft lip and palate. I came as a storm, and everything for me works as a lightning.

I was not, in any sense, in any risk group: there were no other cases in the family (both mom’s and dad’s); my mom never smoke, drank alcoholic drinks, had drugs, or was a junkie during my pregnancy (she never was the latter, by the way!); all the blood tests were fine; I didn’t have (bless me!) any syndrome; and I was neither Asian, nor Hispanic, who seem to have a higher tendency to suffer from it - I was a sweet and chubby, dark haired white newborn baby girl. In other words, it was totally unexpected, and I know that for many of you it was too. I have gone through about eight surgeries, and a lot of other minor “procedures”, but here I am.

I’ll try to give my insights about it, that is, the perspective of the child, and of the adult looking back at that same child and realizing some things will never heal, and others only made me stronger.

Welcome.

P.S.: I know this theme background sucks, I’ll try to improve it.