Elise has a doctor that I love. He is well educated and experienced with children with her kinds of problems, and he’s been in the game for over 45 years. He shoots from the hip and tells me how it is without losing his bedside manner. Years ago, the first time we visited this doctor, something happened that will forever stay with me. While speaking about Elise and her future of impending problems, he came out with, “She’s what we call an FLK.” Now, I had never heard these letters put together before to describe Elise, so I naturally asked the doctor what they meant. His reply shocked the daylights out of me.
“Funny Looking Kid.”
All I could think was--- Did that just happen? Did he just say that? Now, if you know me at all, then you are aware of the fact that I am very hard to offend. I have written a post on that very subject. And, to be completely honest, I wasn’t offended. I was curious. Was he letting me in on backroom slang used by doctors, nurses, teachers, and therapists about kiddos with brain injuries?
At first I thought that surely this FLK thing was restricted to the older generation of doctors with antiquated views on kids with special needs. Nope. I have since questioned several of Elise’s other doctors on this issue, and they have all sheepishly responded with the fact that, yes, this term is widely used in the medical community to describe children like her. I was told by one of her therapists that this expression was originally used to describe kids who didn’t have a distinct diagnosis. They were just odd looking, and it was obvious something was wrong with them, whether it be a syndrome or some form of brain trauma. Over the years, it has become a sort of code word for-- “Look at that kid, something is off!”
I looked down at my little girl, laying on the examining table in her prettiest dress. She was wearing new earrings and matching shoes. Her hair was brushed out so that her curls hung loosely, tied up with a matching bow. To me, she was absolutely beautiful, but at that moment I realized that no amount of bows, jewelry, and pretty clothes could cover up the fact that Elise didn't look normal. In fact, underneath all of those adornments, she can very well be funny looking.
I’ve had to face the fact that, as she grows older, the more “special needs” she looks. The effects of certain medications have relaxed her muscles to the point that she has a hard time keeping her mouth closed when she is sitting upright. No matter how much behavioral modification medication we give her, it will never completely take away her urges to hit herself in the head, grind her teeth, bite her hands until they bleed, and make crazy looking moves with her arms in the air (think New Kids On the Block - Oh-Oh-Oh-Oh-Oh- Hangin' Tough!)
Each year that she grows, she is farther away from the chubby little girl with the sunsuit on looking like a little doll. Baby teeth give way to “big kid” teeth spaced further apart. Her eyes are never facing the same direction, and they jump around in her head at times. She has microcephaly (small head due to small brain), which means her head stays the size of a 9 month old as her body shoots up to a normal size (thank goodness for long hair!) Most people don't realize that for every cute picture you see of Elise, there are at least 30 that I would never show a soul. Half of the pictures that I take of her capture her slamming the heel of her hand into her jaw. If I'm lucky, I can catch a smile, but she has recently taken a liking to smiling with only half of her mouth. Not a good look!
This progression does bother me, but there is absolutely nothing I can do about it.
I think in the past, I must have used her cuteness as something to hide behind. It made me feel better about her condition. As she moves on to new stages of growth with long lanky legs, and the loss of her baby looks, I think I will be forced to hang on to something new besides her appearance. Don’t get me wrong. Every time I lay eyes on Elise, I am struck by her beauty, whether she is in a diaper laying in bed or whether she is all made up. I just want the rest of the world to see her that way as well. Since that isn’t possible, I will continue to distract people from her “oddities” by drawing their eyes to her sparkling jewelry and shoes.
I’m on top of this now. The next time I hear those three letters used to describe Elise, I will respond with:
"Why yes, she is an FLK-- a Fabulous Looking Kid! Thanks for noticing!"