Friday, June 17, 2005

Communication Gap

I'll admit it. I love reading blogs. I read ones written by all sorts of people. I'm a nosy, nosy girl and this is the most gossip I have ever been privy to.

(And yes, I like to use random words like "privy" from time to time.)

I read several blogs written by people struggling with infertility. (Hi Cecily, Julie, and Tertia.) I have not had to deal with infertility myself (hence the two "surprises" sleeping in the other room), but I feel a certain bond with them. Going through a pregnancy riddled with complications and having a child with special needs makes you different. My body could not handle the fundamental process it was designed for - conceive, stay pregnant, and give birth to a healthy child. Rational or not, I live with an overwhelming feeling of failure most days and a bitterness that will stay with me for the rest of my life.

One of these women is in the process of adopting a little girl from China. A lot of her entries lately are about the ridiculous things people say (or, sometimes worse, don't say) regarding her upcoming adoption. I'm interested because I know I am totally one of those stupid people. Her writing is very educational.

A friend of mine was adopted. I know almost nothing about the details. She doesn't talk about it much, which is totally her right. And really, I never ask. I wouldn't know what to say or not say; what is None of My Damn Business and what she'd actually like to talk about. It's easier to say nothing than to cause hurt feelings by saying something dumb. I am the master of putting my foot in my mouth, so sometimes, it's just better if I keep it shut.

Having a child with special needs, I know all about both stupid questions and the lack of any questions. I'm not really sure which is worse. Right or wrong, most of the time, I try to avoid the topic completely.

I walked out of work this afternoon and a woman from my department caught up with me. She had overheard me earlier today and asked if my son's name was Ethan. She loved that name, and wished her pregnant sister would use it if she had a boy. This was neutral conversation, no big deal. Then it got a little more detailed.

"How old is he?"

(wracking my brain... hmm...uh...) "He's 3 and a half."

"Plus you have a baby, right? Wow, you have your hands full!"

"Yeah, we do." (quick dash for my car) "Well, good night!"

You would think "How old is your son?" is a simple question. But really, it isn't. I knew this woman did not know about Ethan's issues. So saying he is "3 and a half" gave her a whole different picture of my life. What should Ethan be like at "3 and a half"?

Going to pre-school and playing t-ball; potty-trained and learning to dress himself; questioning everything and full of wonder; running and climbing and playing.

Yes, with all of those things our hands would be full. And they are full, but full of other things.

Fighting insurance companies and arranging special ed; battling seizures and inconsolable mornings; feeding soft foods and changing diapers; surgeries and casts and physical therapy.

Her picture and my reality are two different things. But in a 3 minute conversation at the side of my car, it just isn't important to me that she see the truth. Let her assume he is "normal". What harm can it do?

I feel guilty, but I hate talking about Ethan's problems to strangers, and even acquaintances. I never know how much information to give. When someone asks something as simple as "How old is he?", I always feel like there should be a "But!" at the end of my answer.

"He's 3 and a half.
He is developmentally only 6 months old and he is blind and will never walk and is mentally retarded."

The average stranger on the street doesn't need - or want - to know all that. And I didn't want to get into all that with this woman. I see her infrequently and we might not have another conversation for months.

It isn't that I am ashamed of Ethan, or that I don't want to talk about him. I have no problem shouting all of his issues and successes from a rooftop (or, you know, the internet). It's just that, most of the time, it isn't a simple answer. And I don't feel like starting a 2 hour conversation on my way out of the office.

And honestly? I really, really hate the Pity Stare.

You know the Pity Stare. Be honest. You've given it a few times. I know I have.

As soon as I tell someone my son has special needs, or is blind, or whatever, I get that glazed-over look. They cycle through emotions rapidly before my eyes. First, they feel stupid, as if somehow they were supposed to be psychic and instinctively know this already. Then they feel sad, for everything he's going through. Then they feel scared, oh, man, what should I say, don't say something dumb, don't say something dumb. And then they look at me like I'm a puppy about to be put to sleep.

I hate that look. Even better are the comments.

They feel guilty. "Oh, I'm so soooo sorry." It's nice and all, but I always feel the urge to remind them that it isn't their fault.

Or, they try to be helpful. "Did you try XYZ drug?" "I hear hippo/hydro/smell therapy is really good for that." "Did you try calling the ABC agency? You would definitely be able to get money." Most of the time, they are misinformed or just plain crazy. But, they kindly tell me, if I really loved my son I'd try anything. Okee then.

Or, they say something dumb. "Oh, my cousin had a daughter with problems when she was little, and she had therapy and she's FINE now. She walks and talks and EVERYTHING!" Yeah. Different kid, different prognosis. But thanks.

Or, they are too dumbfounded to say anything. "Oh, um. I... Oh." That's fine, too. I don't expect witty commentary or anything.

To avoid the Pity Stare and crazy comments, I usually try to keep Ethan's situation on a Need to Know basis. Family, friends, people we care about, work with every day, they Need to Know. So we tell them and get all the information out in the open. But everyone else can live in a fantasy land as far as I'm concerned. They just don't Need to Know.

Jete and I aren't support group type of people and we aren't close to anyone else with a child like Ethan. But I'm curious how other people handle the questions from those who don't Need to Know. Like:

"Isn't it exhausting chasing after him all day?

(upon learning I have a 2 sons) "How do they get along?" or "Does Ethan like his little brother?" or "Is he a big helper with the baby?"

"He must be getting ready to go to kindergarten soon, right?"

"Does Ethan like to (watch the Wiggles/play sports/fingerpaint/go to the zoo)?"

(and, our all-time-favorite when going out with Ethan) "Is he sleeping?"

Over time, I'm sure we'll get used to the questions. And the Pity Stares. I'm pretty tough skinned, and I honestly don't care what people do or don't say. I know 99% of the time it's a combination of ignorance and good intentions. To people with whom I care enough to share the details, I usually give my stock answer:

"He's happy. He's healthy. We're all doing just fine."

And really, that's all that matters.

1 comment:

Anonymous said...

I'm glad you continue to share Ethan's story and your experiences. All of your posts have touched my heart. And this post is so important. I won't do this, but I want to just make a few copies and hand them out to the people in the mall that stare, or the people who bumble around trying to say the right thing, or the people who deep down inside are thinking "glad it's you and not me". Your connection with infertility blogs is a natural one in my opinion. We have different stories and struggles, but dealing with the clueless population at large is the same experience.

Fractured Fairytale