Tuesday, August 02, 2005

Perceptions



What's the first thing you notice when glancing at this picture of my daughter, Olivia? Honestly... Is it the beautiful juxtaposition of such a new life in the midst of such an ancient setting? Is it Olivia's toothy grin? The little wrinkles above her nose when she really smiles? The way her wispy hair curls at her temples? ...Or is it the big red lump on her forehead?

Olivia's hemangioma has taught me a lot about social perceptions. Not that it's avoidable, or even necessarily bad -- but it's obvious that a person's initial impression of another human being is undeniably influenced first and foremost by "abnormality" over "normality" and commonality. Over the months in which our daughter's hemangioma has grown and persisted, Marci and I have fielded countless hundreds (if not thousands) of questions from strangers about the growth on her forehead...

"What happened there?" (Nothing, it's just a medical anomoly occuring in as much as ten percent of the population). "Can they treat it?" (Yes, but it's a long process). "Does it hurt?" (No). "Is it going to explode?" (No). "Woah, dude -- what's up with that?" (I've never been exactly sure how I'm supposed to answer that one)... Of course, little children are the most direct with their questions and observations -- still, you'd be surprised at the knee-jerk reaction from many adults. But then again, what should we expect? It's noticeable. It's unusual. It's unfamiliar. It's different.

Webster's New World Dictionary defines a hemangioma as "a benign tumor, lesion, or birthmark consisting of dense clusters of blood vessels." But is it really benign? Perhaps medically, it's a less aggressive and less dangerous form of tumor... But socially, I have a hard time seeing it as truly "benign." From a cultural and societal perspective, Olivia's hemangioma is absolutely malignant, malicious, and malevolent as it blocks the public perception of my daughter. Strangers miss her smile, her spunky curiosity, her intelligent eyes, and her smooth perfect skin because it's hard to see past the big red lump on her forehead. She's seen first as a medical anomoly, and then -- only second -- as a beautiful baby girl...

Sadly, I cannot blame others for this first impression -- as I'm woefully aware that I'm guilty of the same on other levels. How quickly do I make a snap judgment on a person because he or she is Black? Asian? Marokaans? Surinaams? Overweight? Cross-eyed? Parapalegic? Gray-haired? Homeless? Beautiful? The eyes of all mankind are infected with a socially-transmitted disease that blocks our perception of a person's true... well, personhood. And this seems to be a pitiful fact of life.

Yet I grieve this fact. And the beauty of my daughter propels me to continually scrape off the scaly cataracts from my eyes -- also clawing at the eyes of those around me, as I go -- to seek and rejoice in the subtle, more meaningful beauty that fills my universe.

11 Comments:

At 7:15 PM, Blogger Bryan's Blog said...

Eric,

You have a beautiful daughter! She is going to be smart, intelligent, attractive, and kind just like her parents! I really enjoyed your honest look at first impressions! Love you man- Bryan

P.S.- I finally joined the world of blogging. I broke down. the address is http://www.blwiles.blogspot.com if you ever want to check it out. Talk to you later!

 
At 8:15 PM, Blogger Naomi said...

Eric,
i really appreciate your insight. this was written beautifully! i wonder how much we miss out on in life because we can't see past the outward appearance of things?

i look forward to meeting Olivia-- in all her beauty, inside and out.

 
At 9:57 PM, Blogger Crystal said...

Not to be insensitive and your post was really really poignant, but it's probably a good idea to look into having the tumorous growth removed. Society can be harsh and judgmental, and people don't see past flaws. To allow your daughter to carry the heavy burden of a disfiguring condition is almost verging on child abuse! This is my story: After an eye injury that cost me the vision in my right eye, that eye started to turn out. It's a common occurance when losing vision as an adult, they call it "lazy eye" because since your brain isn't using the blind eye anymore, the muscles grow weak and the eye "floats" outward. Well, to make a long story short, after several years living this way and having people taunt me behind my back, I finally broke down and had medically unneccesary eye muscle surgery. Yeah, it was painful, and the eye was blood-red nearly six months, but now I can actually look at myself in photos and be content that I look normal, like my old self again. Until I had surgery some people wouldn't even look me in my eyes, and I felt invisible, but now I feel whole again (at least on the outside).

 
At 10:15 AM, Blogger Eric Asp said...

Thanks for the comments and support in everything... I guess I wasn't very clear in my original post, but we are pursuing treatment to have the hemangioma surgically removed. I will love my daughter no more or no less because of her hemangioma (or lack thereof), but because of the social malignance of the growth treatment just seems like the most loving thing to do.

Because hemangiomas typically begin involution (going away) after 6-12 months of age, most doctors want to wait through that time period to see what the body will do to take care of the problem itself. But once a hemangioma gets to the size and prominence of Olivia's, even normal involution will typically not leave a "cosmetically acceptable" result -- so we're more than ready to move forward with surgery.

There are some complications with the procedure, though, because of a possible link to blood supply (or maybe even internal hemangiomas) on the inside of the skull. We have an MRI scheduled for 16 August to figure things out further, and that should go a long way toward clarifying the situation... We'll have to provide some kind of an update in the future.

 
At 3:23 PM, Anonymous Anonymous said...

My daughter grew up with a large, disfiguring hemangioma on her nose. She is 15 now, we didn't have as many choices "back then"..Emotionally,, mentally, and socially, she is fine in all senses of the word. She is still beautiful inside and out to me and everyone who meets her. I applaud you for your beautiful attitude. It makes all the difference in the world to a childs growing and ever-changing self esteem,,,,belive me, I KNOW!!!!
EPR

 
At 3:45 PM, Anonymous Anonymous said...

Eric,

Olivia is absolutely breathtaking! I hope that someday you can look back at your journey and see how far you have come and how much you have matured as a person because of your experience. I find it mind-blowing that Dr.'s say they see this condition (Hemangiomas) all the time and yet, the public has yet to receive an education. I myself, was guilty of the unknown, until it affected me personally when my daughter Hannah was born. She too, has gone through the stares and snickers at such a very young age..(She is now 12 months)... whenever I start to get angry at the public, I calm myself down by remembering how beautiful she is and what a wonderful sound her laugh is. Sorry, for those of you who can't see past a vascular anomolie... You're missing out on a chance to meet a really wonderful child!

Bless you!
Kerri & Hannah

 
At 8:02 PM, Anonymous Anonymous said...

Olivia is beautiful, I have a special place in my heart for babies with hemangiomas as mine has a large superficial one in the middle of her face, but I see Olivia's beautiful smile first and the beauty in being different even. (maybe it would be different if I hadn't been on the journey I have this past year, and maybe that's why I had to go on it) My daugher Gracie agrees, she was on my lap and I showed her the pretty baby and she got the biggest smile on her face and said "Hi" as though Olivia were in front of her!!!! Hugs from one beautiful baby to another.

 
At 3:51 PM, Blogger Eric Asp said...

It's a curious but definite brotherhood experienced by those who have experienced the trials of dealing with a vascular birthmark... Marci makes a casual reference to this posting on the MSN discussion board, and all of the sudden readership of my humble blog multiplies exponentially!

The comments in this space have only reaffirmed my initial observation that our lives are filled with beautiful -- even if slightly "abnormal" -- people. We just have to be ready and willing to see them, even in the face of the obstacles...

 
At 4:45 PM, Blogger meljoy said...

I appreciate your perspective. I liked reading this particular blog, mostly becaus emy son suffers from several ailments, but they aren't on the outside. I find I have a really hard time getting people NOT to look at his looks. We always get (evern from friends and family) "He's so cute.", "He's adorable", But we never get a "How is Aaron?" WHY? Because with everythign that's going on, they all get confused and don't understand what is going on, so they would rather not ask and just keep it about somethign safe. And when I try to explain it, they get frustrated by the technicals names and doctors and what they do, so I just don't even bring it up anymore.

I'm just glad someone asks you about whats up with your very very beautiful daughter, and they don't gawk, point, stare and whisper amongst themselves while your child goes into seizures or does something completely off the wall and autistic...

-mel

 
At 5:24 PM, Blogger michele said...

honestly, the first thing I noticed was her cute little toothy smile and then the sunlight on her nose and only after I had looked at it for 30 seconds or so did I notice her hemangioma.

I'll be praying for her doctor visit. Hope everything goes well.
-m

 
At 3:43 PM, Anonymous Anonymous said...

Our daughter of 15 months has also a few hemangioma's, one is a large one on her ear. We get medical treatment in AMC hospital in Amsterdam, and I heard from a mother that emails with Marci, that your daughter goes there as well. (prof. van der Horst?) How is Olivia doing now? The way you describe how others react is so true, I get it every day, stupid comments in situations when I don't ask for it. Even last week in the waiting room in AMC, a man with a daugher asked right out of the blue (I just walked by) "is that thing filled with air??" I think his head was, but never mind. Or in line at the grocery store, when tons op people are behind you, someone has to ask what that big red thing is on her face, and right away you are the center of attention even when you don't want to. What worries me the most is that when Isabel is older she is going to hear en feel these comments, and I wonder how she will react.
She has a website and blog as well www.hemangioom.nl and www.hemangioom.web-log.nl They are in dutch but you can see lots of pictures and short films of Isabel.

I am glad that winter is coming so we can put on a hat and go about our things without being noticed.

Keep us updated..........

Greetings,
Candy

 

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