K. and I had a little bet going. We were wondering if people would stare at us more or less now that Z. has the tube. I guessed less. I was presuming that random normal folks don't know what an NG tube is and will assume that Z. is critically ill when they see her tube. If that's true, I decided that people would be less likely to stare at us.
I have this whole post about being a conspicuous family in my head. It's about how you think it is going to be ahead of time, how it has been for the past 6 months, how even though people are probably well-meaning there are times when The Noticing is annoying, how some days like today I simply refuse to make eye contact with anyone (a particular skill of mine) as a way of coping, with a possible meander into my own personal feelings about the staring. Because people actually do movie-type double takes. All. The. Time.
But I don't have anything profound to say yet. The post rumbles around in my head and I try to find ways to make it funny. Some days it's a knee-slapper. Other days I just groan.
Anyway, no long post about our movie star existence. Just the realization that I was about as wrong as wrong can be with regard to the staring. Because it increased dramatically, if one trip to the mall is any indicator. More people stare. Then they smile. B-I-I-I-I-I-I-I-I-I-I-I-G smiles. Kind smiles. Supportive smiles. Occasionally knowing smiles. Right after they stare. Oh, and did I mention the staring?
And before you all tell me that they are staring because Z. is so gorgeous, I will admit that I know she's a looker. But she also has a tube coming out of her nose and plastered across her face and that takes some getting used to. Takes the bloom off the rose a bit, if you see what I'm getting at. Add to that the excessive drooling we are coping with (when will that tooth GET THROUGH???) and the fact that she often drools out whatever she has just consumed and I'd have to say that even as her mother she is on the other side of lovely much of the time right now.
I am having a powerful urge to either shave my head, dye my hair some unfortunate color, or change my personal style to something a bit more outrageous. I am of the mind today that if they want to stare, I'll give them something to stare at. And it won't be the peanut with the fluffy hair and the tube.
you know I hear you on this. Z.'s ezcema induced scabby hands and neck produce the same reaction. Well, we get the "oh my god, is that infectious??" stares *and* and we get the "it must be terminal, supportive smiles" stares. I have to admit the only people who treat it like "oh, she's got bad ezcema" are Asian Americans and African Americans. People from both those groups come up to us very frequently with (helpful and non-judgemental) suggestions on how to treat extremely dry skin. Thankfully, I finally have a regimen that works for Z. - woo-hoo! And fewer of the "poor dear" stares too. I have to admit..those types of stares just piss me off. My child does not need pity - she just needs less dry skin. Or a mama who is more aware of all the things that contain one of the many allergens she is suspectible to and more vigilant with the vaseline. ;) thinking of you all. smooch smooch.
Posted by: chicagomama at March 18, 2006 7:30 PMCurious Girl had a button tube right away, so the staring we had was all about the feeding in public (or when her shirt was pulling up). I dealt with the staring in stages: at first i was very uncomfortable, and then didn't mind so much. One stare I still remember, from an older kid who walked by our table in Wild Oats as I was feeding CG, and he looked a bit, and then walked by, then turned back with a look of disdain. I felt horrible, and can still see his face, 2 years later. Eventually it all normalized and I had my stock range of responses to questions about the tube (which, as they are for questions about adoption, varied depending on how obnoxious I thought the person was).
In a museum in Western Massachusetts, I was feeding CG and the chef at the museum cafe came out to talk to me about her daughter's feeding tube (her daughter is now an older teenager). that was a cool connection--she even had a photo album and then remembered us when we came back a year later. I did meet more people than I would have thought who also had a kid with a tube.
It is a weird way to move through the day, navigating the stares. I'm sorry you're dealing with it--but I know you'll deal with it in high style.
Posted by: Susan at March 18, 2006 7:52 PMI say dye your hair--pink is a lovely color for spring.
Sorry your daughter is having a rough time. Take care.
Posted by: chris at March 18, 2006 8:06 PMmy hair is pink right now, if you're looking for inspiration! :)
Posted by: wix at March 18, 2006 10:03 PMI limp, so I get that. I stopped making eye contact years ago because I'm tired of looking at people's faces and seeing them staring down at my feet. It always takes every bit of control I have not to say "stop it, asshole!" because I know it's normal curiousity BLAH BLAH BLAH but it still bugs me. The worst is when they turn their heads to KEEP staring as they pass. It's a cane, people- not an alien death ray! I wanted to get a shirt that says "don't stare, just ask" but one of my friends said that men would assume it was about the boobies and not the cane.
I'm actually looking forward to having a baby because maybe then people will actually ASK me things instead of staring and not saying anything. I welcome the chance to discuss things with people instead of having them assume stupid things, worrying about offending me or, worse, assuming that a physical disability clearly means that I am also mentally and emotionally disabled and God Forbid they distrurb the sleeping monster because I might attack them or drool on them! (sorry, I clearly have some people issues ;)
I'm sorry you have to deal with this crap. Honestly. I wish I had an answer, but the only thing I know how to do is keep my head high and just smile FIRST, or say something "hi", etc. when they are in the midst of studying every part of me but my face. That knocks them off guard.
Or I just stare back until they finally look at my face and then keep staring at them (childish, but after a long day, I can't help it...)
I have yet to hit anyone with my cane... You just never know, though.
Posted by: chel at March 18, 2006 10:31 PMI get stared at ALL the time. And yes, it's because I am the ONLY white person in a city of 100,000. I often feel like a combination of a movie star and a two-headed freak. (no offence to anyone with 2 heads - hey, we're all a little freakishin our own ways)
Posted by: bec at March 19, 2006 6:07 AMI hear you. Quinn used a medical frame walker from about 13 months of age for over a year and wow did it garner a lot of stares. What I found amazing was that kids were generally just curious and asked questions about it/her - like "why can't she walk" - "why does she have that?" where as adults used to say "what's WRONG with her?" - I found the differences in the questions and stares fascinating and bothersome. It got eaiser to ignore with time. Most times I didn't mind the questions if people were polite, I almost took it as an oppourtunity to raise awareness about kidney disease and vision disorder, and for me (after some time), I saw the bigger picture of acceptance of differences of all kind a lesson for others. I did however, at times, get tired of being the poster family of such awareness.
I hope in time, it gets easier for you. I hope Z is tolerating it all with little discomfort and that it helps her growth. And that E is doing better with all the changes.
Posted by: Julia at March 19, 2006 12:01 PMFirst, I'm sorry. And I hope it gets easier, and I hope that Z is doing well with the tube and I'm thinking of you all.
Second, I'm REALLY good at that "not making eye contact as a coping mechanism" thing. Comes in handy.
Sorry about the staring. I think sometimes people don't even realize that you can see them too.
Posted by: Bethany at March 19, 2006 7:27 PM