Monday, February 25, 2008

Who doesn't like men? Banshees, maybe.

The funeral rocked. As much as a funeral can rock. Everybody was on their best behavior. We remembered the good things about grandpa and nobody came to fisticuffs by the grave site, which was a very real concern for me. Although Niko, out of his element, spent the time doing his death metal scream on the other side of the cemetery with Dad and Luke while I bent my head and tried to look pious during the dedication.

Do any of you struggle with how much information to give out? When Niko was diagnosed with Williams, we had been living in the same area for a while, and he was a year old. So he was already established and it didn't seem to change any of our friend's perceptions of him. Or at least they were generous and gracious enough that we didn't pick up on it, if it did. Then we moved to this (insert colorful language of your choice here) city, and all of a sudden, for the first time, we had to say, "This is our son Niko and he has Williams." And people were taken back. What is this strange syndrome? Is that why your son simply cannot sit still? Is that why he throws back his head and howls like a banshee on crack? Do you believe in banshees? And how would a banshee get crack? The public must know.

I don't know how to address this at large family gatherings. (Williams, not banshees on crack.) It's always been easy because my side of the family doesn't gather so much, so it never came up. I've always been an open person. In my opinion, it's always easier if people know things because then they can be prepared enough to behave appropriately. Unlike, say, when people get a divorce and it's a huge secret and suddenly you get a verbal caning for asking them to remind their husband that he's singing in church next week. Yeah, some of you guys know what I'm talking about.

Uh...I mean, that's just a random example.

I don't want people to think that Niko's misbehaving, because he isn't. He's doing the best that he can. I want people to be sensitive to the fact that he processes thing differently. But I also don't want to be tottering around pointing at my son and saying, "Niko? Williams. Deletion of the elastin gene. Delayed and loud." Because that's just stupid.

Other funeral highlights: Pervy uncles that somehow found God, emo cousins that suddenly turned respectable, and questions about my outfit, which was a black, white, and gray dress with my 4 inch Red Stilettos of Death. My response? "Grandpa's dead. I'm not." Also, my great aunt blinking her big blue eyes at me innocently and asking if my husband likes men. "No, he's married to ME", I say, prompting a long debate with my brother about men we know who do actually like men, but are still married to women. One of our super enjoyable "Psychology major vs. Sociology major" rows. We put on gloves and boxed. Every argument had a thesis statement and was backed up by three points. Turns out she just meant, does he like men to, you know, play basketball with, and stuff. Oh.



Ginneh said...

You are hilarious! I need to go buy some red stilettos!

Nancy said...

I think we all need a pair. Of red stilettos, that is.

Love your blog. :)

P.S. I have only been at this WS thing for 2 years now. I am not comfortable talking about it out loud, although I fake it sometimes.

Agnes Minerva said...

OH, so glad the funeral was alright. I can't believe people actually commented on your outfit?! How silly.

'S far as explaining Niko, I say "meh." I mean, you're a respectful and open person and you'd gladly talk about it with people who ask nicely. But otherwise, I think people will figure it out - or not. But neither you nor Niko owe anyone an explanation. That's what a few good friends are for, by the way, people who understand and love Niko - and you! - who can stick up for him when the gossips get outta control.

Laura said...

Okay, I'm going shopping for some shoes.

I have no problem sharing our WS story with anyone in ear shot if it will save us from blantantly stupid and ignorant questions and comments.

Tara said...

You are freakin hilarious! I'm like laura - I have no problems explaining my daughter if it will keep from stupid comments. Although, my side of the family seems to get it - there is still 'silly' remarks from a sister-in-law on my hubbie's side of the family. I've decided some people just like to be critical instead of just realizing your child simply can't help but act the way he's you said, he's doing the best he can!!!

Every minute counts.... said...

I love the way you write. Makes me smile.
I am glad that the funeral went smoothly for the most part.
Yes, I do tell as much as I can about WS and try not to overload people too much. I agree with Laura and Tara, if it saves you from some of the "wonderful" comments, then great. If it just makes people think for half a second before they open their mouths, even better!!


Amy said...

The info I give out on Avery is typically nil. I assume family members will do their proper jobs and gossip about me. I don't mind giving out info and simply assume everyone knows. People that give a shit will ask you meaningful questions, those that don't give a shit don't matter(;

Perrin said...

I just found out yesterday that our daughter (almost certainly) has Williams, and I've been all over the internet for the past 24 hours researching. After 23 hours, I found your blog. Finding it has helped me get past the initial "OH MY F$%#^& S#%& WHAT AM I GOING TO DO NOW?!" stage.

Thank you :)

Katie Aldrich said...

I think your response to people's questions about your outfit says it all...You know what you think of Niko, and other people, ultimately, will follow your lead. When I think of him, my first thought is, that's a well-loved kid.

Laura Oler said...

Your blog is one of the reasons I don't blog. Because if I wrote, it would be ramblings. But when you write, it's funny, insightful, and thought-provoking. I think you're doing a great job with Nikko -- I still remember your story at Costco in Seattle. I can't imagine why people say such dumb things. I loved your family pictures, by the way.

Ginneh Akbar said...

I know this is an old post, however I feel the need to thank you for coining the phrase "howls like a banshee on crack" other than my own kid, I've never had the pleasure of hearing another kid with Williams cry, however in my opinion its completely accurate and I think we should talk to the Williams Syndrome Association about including it as a diagnostic criteria. I'm not even sure what a banshee is, and like you, I don't know if they would know where to get crack, but somehow its still appropriate. I will never ever get used to it.