Editor’s Note: A cleft lip, with or without cleft palate, is the fourth most common birth defect in the United States, affecting one in 700 babies a year. In this guest post, Roberto Santiago writes about his inner turmoil reckoning his daughter’s quest to look “normal.”
It’s a weird thing when your 4-year-old gets a nose job.
Before you get upset, I’m not a pageant dad. This was a medically necessary nose job related to my daughter, Lou, being born with a cleft lip and palate.
Since the day she was born, our surgeon has repeated the phrase “normal by five” several hundred times. That phrase makes me uneasy. In my years working with people with disabilities, mostly as a sign language interpreter, I’ve come to distrust the term “normal.”
To many in disability and mental health communities, the word is oppressive. “Normal” creates a caste where a non-disabled person falsely assumes a superior position. The disabled person feels expected to aspire to normality, a state they may not be able to, or may be disinterested in reaching. “Normal” gives a statistical concept an inappropriate emotional connotation. I don’t want that burden placed on my little girl.
For Lou, we knew being “normal” would require three or four surgeries on her cleft lip and palate before she entered kindergarten. The latest one would be a lengthening of the columna, the external fleshy bit of the nose that divides the nostrils that her cleft caused to be very short and unable to grow. This gave her a vaguely cat-like look with nostrils more like little slits than round holes. It also caused folds inside the nostrils to easily clog.
Her recovery from that surgery took three weeks, two more than expected. She experienced discomfort rather than much outright pain during that time. The exception came when we had to clean the constant excretions and dried goop from her recovering nose. And at those times, the pain was not limited to her face.
“I hate how my nose looks!” she screamed. “I hate how it looks when it’s bloody. It looks terrible. I hate it. It looks gross and yucky and ugly. I wish I didn’t have a nose. I just look at my face and I wish I didn’t have any nose. Until today I just hate having a nose.”
This was my biggest fear before the surgery. I feared she’d hate her new look and want her old cat nose back.
My wife tried to reason with her, but Lou just kept yelling. Finally, I showed her a picture of Voldemort from the Harry Potter movies.
“See honey, this guy doesn’t have a nose. Is that what you want?” I asked.
“Oh. My. God,” she said.
She finally stopped protesting.
Still, the goop, the discomfort, the blood – none of that is what lingers with me. It’s how she looks.
When she was a baby we would speculate on who she would favor when she got older. She has my coloring, and she has her grandmother’s eyes, and we knew that her nose would be her own. It wouldn’t look like either of us because it was going to be created on an operating table. We knew we’d spend five years with one version of her face, and then it would change.
She looks like a different kid today. But she also still looks the same. This isn’t a Jennifer Grey situation here. The observation I keep coming back to is the one that makes me feel guilty for thinking it. She now looks “normal.”
Sure, the goal of the procedure was normal function, but the side effect was a “normal” look. I know I shouldn’t be using “normal.” I should use “typical” or some other term. But “normal” is the one that keeps coming to mind.
And I feel guilty about that.
I feel guilty about how relieved I am.
I feel guilty because the outcome for my daughter isn’t the outcome every cleft kid has.
We grow up being told looks don’t matter even while our peer interactions and media messages impress upon us that they do. Maybe my guilt is really just disappointment in myself. Disappointment that I’m shallow, that my daughter’s looks hold importance to me.
Lou will likely always have visible scars from her cleft lip surgeries. But each time she goes in she ends up looking more like a typical kid, and less like the baby we nicknamed Zoidberg after the cartoon lobster-man on Futurama. I’m happy to think she’ll be able to avoid being emotionally destroyed by her peers at school. I’m happy her social life won’t be hindered by deformity. (She’ll only have to face the usual horrible social pressures! Yay!)
It shouldn’t matter how she looks, especially not to me. That’s the message. That’s the ideal. But it does matter because I know how the world really works. So I’m conflicted over how her new face makes me feel. Because it’s a weird thing when your 4-year-old gets a nose job.
ABOUT THE AUTHOR
Roberto Santiago could never decide on a job so he endeavors to have all of them. He is a writer, teacher, sign language interpreter, rugby referee and stay-at-home dad. He writes about the intersections of family, sports and culture at An Interdisciplinary Life.
This is awesome and makes me think about the conversations I will need to have with my daughter someday. Your daughter is beautiful, and you rock!
I’m a social woeker, former direct care worker of kids and young people with disabilities. I recognise their positives, strengths as well as disabling inpairments. I am so sick of the ridiculous touchiness about the term normal.
Normal derives from the bell shaped graph in stats. It has a huge hump that covers what the majority of whatever population and reason you study it for. Yes the majority of disabilities fall outside of this big hump, and your varied but typical population fit in that hump. It’s appropriate to get comfortable with being in or out of that graph as fits.
Not being the norm is not a slur, or denigration or being lesser, just a fact of whatever impediments that one expects assistance to modify or assist with. Depending on other compenasting attributes will be the level of positive factors that diminish the impact of any disability and no terminology that is politically pretending or viewed as imperfect terminilogy stymy that.
Rather than have touchy games about language in the disabled, promote dealing with the realistic needs and assistance to effectively aid their and carers life situations.
It’s not the language that causes barriers, it’s peoples capacity to be motivated to make adjustments or provide proper service access.Letting the normative population understand the full truth of various disabilities, educating them on more empathetic appropriate responses will make more difference than pretentious language promotion that the disabled will not be able to live up to. Like they’re differently abled, just irritate as the normative person inexperienced with the grasp of real disability gets irritated by a seeming lack of delivery, capacity to fit in to their pace etc..
Yes, being disabled means that one hasn’t the full capacities that another in their age cohort has in the normative bell curve as well as ongoing impairments of varying severity currently incapacitating them.It doesn’t mean even to the most non reflective members of the mass populace that these disabled may not have other abilities that are functional or even of value. It’s a taken forgranted, regardless that these abilities still don’t fully compensate for the impairments.Otherwise there wouldn’t need to be the need for treatments, therapies, supports etc..as well as consideration of inclusion, personally, ethically, or legally.
Language isn’t the major issue in refining as a factor causing disabled persons or their families pain, it’s far more that most people are unfamiliar with the etiology, pathology and how that impacts on persons and families.
It’s when people understand cause, effect,impact on physiology,neurology they better concieve of the person within, real degree if impairments and can more effectively, appropriatrly respond plus more compassionately.
The real tool for change is public biological education combined with ethics, not false language twirks-the latter hasn’t helped anything!
She is the most beautiful child inside and out. I know first hand how special she is being as she attended our school for Pre-K. She has the greatest of smiles and is so stinking cute! She is smart as a whip and that is all because she has amazing parents. Thank you for letting us be a part of her early years of school.
BWAHAHAHA! Look at that little girl in the first picture! OMG! She is TOO CUTE! That look is so full of sass and attitude, and so atinking cute!!! I imagine she will be just fine in life. She’s got this. 😉 That is a little girl who has spunk and spirit!
Also I just wanted to tell her dad, thank you for posting this. A lot of people dont realize how hard it is on the parents of theae children, amd the children themselves in some situations. Its not always a quick surgery in and out and everyrhings beyter kind of deal, like a lot of people seem to think. So I appreciate you taking rhe tine to share this. It may help open some eyes and helps others who are going through similar things. Who needs “normal” anyway?
You had me at Zoidberg. As a father of a soon to come daughter with a cleft lip and palate I had the same nickname in mind :). I concur with everything you say about normality, it’s hard for me to consider my future daughter as something else. Even considering a cleft lip as a disability is hard for me – to me it’s just a difference with some hardships I won’t deny. Thanks for sharing your experience as a father and your daughter experience which for us is so precious in order to deal with it when the time comes.
As an adult with a cleft lip, I’m baffled that you (and the writer for his child) could think it appropriate to have any “nickname in mind” for your then-future daughter. That she will be too young to understand is besides the point.
I would feel betrayed and humiliated if I later found out my parents had every nicknamed me based on my cleft lip based appearance.