Monday, May 19, 2008

O's Nose

You know how when you have a place in your mouth where you've bitten it and then every time you eat anything you end up biting that area again and again? It's painful and oddly unavoidable. That area becomes a magnet for pain. This is what has happened to O's nose.

For being born with a cleft lip, her nose sure is what seems to drive all the issues in her life. First her nose was somewhat non-existent and then she had her first repair. Then her nose was flat. Then she had reconstructive surgery which did great things, but required her to wear stents. They were supposed to be left alone for 8 weeks which was fine until her twin brother accidentally stepped over her face and kicked her in the nose. Pain. crying. blood. tears. awful.

That was about two years ago. Since then we've had another surgery to try and correct the damage done by L's foot. This second round with a stent was going fine until she bumped her own nose. Pain. crying. blood. tears. awful.

Now, here we are on yet the 3rd round with with a stent. This one is unlike anything she's had before because it isn't for nasal reconstruction, but instead to keep her sinus cavity open. Back in March, her doctor cleaned out her sinus cavity of scar tissue that was blocking her airway and in order to make sure it heals in the correct form, he placed a 4 inch stent in there. It's been a long haul filled with blood, gunk, puss, stink and a sinus infection. We had reached a sort of "tolerance" mode with the stupid thing. Things were good. It wasn't draining crap. She was finally getting used to it and it's coming out next week. And then, yesterday happened...

We were at my parents' house having dinner. We had roasted hotdogs and marshmallows and as my mom and I were cleaning things up, the boys were playing in the front yard. J and L had gotten some tennis balls and a plastic bat and were playing baseball. The girls decided to walk to the very far end of the yard to play. This is the arrangement they have nearly every time we're all outside at their house. So, L was batting and K and O were happily playing at the opposite end when L hits a freakishly long ball. It sailed up into the air a very long way; J ran to catch it. It was much too high, so it went into the trees, bounced off of a few branches and once it emerged it hit O's glasses, making a large mark on her face, her nose and then caused to glasses to fly off into the bushes. The next thing we heard were screams of terror and all of her siblings running to her asking if she was o.k.

Now, you may say, "It's your own stupid fault for letting her play where someone was playing ball." Or, "How can you be so careless?"

But, I wasn't being careless. Under normal circumstances, there is no way that L could ever hit a ball that far. I don't know how he hit it as well as he did. Since my parents' yard is big, there is never a danger of anyone getting hit with anything unless the two people are right next to each other. I simply don't understand what force of nature causes everything to hit her nose.

It didn't bleed at first, but later it started dripping blood. This means that the stent was bumped and has caused some damage. Next week when she goes in for surgery to remove the stent if the passageway hasn't healed enough, they'll have to do a skin graft. I'm just so tired of this. I'm tired of all the complications. I'm tired of one simple thing never being enough. I'm tired of having to explain how all this medical junk is "for her own good" and how "it will make things so much better".

I know I have to be positive. I know that my attitude will directly influence O's interpretation of her birth defect, but right now I want to tell her, "I'm mad that you had to be born with a birth defect. It's unfair. It's painful in more ways than one and sometimes I want to slap the faces of parents who don't see their children's normal faces as a blessing from God and I sure don't have any patience for anyone who looks at you to get a double take as they try to figure out what is wrong. My heart hurts for you, sweet O, because our society is too superficial to ever see past anything but perfection."

But, I won't say that. I can't say that. I have to pretend that it's all smooth sailing. For right now, she believes me and I dread the day when someone comments on her appearance in a way that crushes her heart and then she realizes that life isn't smooth sailing and that some people can have poison in their hearts.

1 comment:

Anonymous said...

Oh. My. God!!! That poor girl... and poor mom. Ask the PS if he has some sort of bubble you can put over her head until all is healed. The upside to that is people will focus on the bubble, not the nose. :)
Ahhhh yes, poison in a heart. Unfortunately, we know someone who is traveling the same journey and is the wickedest witch of all.