cloudy perspectives

Someone asked at a bible study the other day something about at what times "do you sense the presence of God?". That's easy. When the sun comes out. When the estrogen levels are good. "When do you not sense the presence of God?" Also easy. Invert previous answers. This is why I am wary of my senses. Gray rainy weather that lasts more than a day begins to make me question things and dwell on the worst possible answers to those questions.

Perhaps that's why I said something yesterday to my other and-always-sunny-on-the-inside half about the fact that knowing a person has a handicapped child changes how that person looks to others. In a word they look less sexy.

He took a moment to think about it. He said he doesn't think of himself as "the father of..." but I was probably right. Others do. I know I have watched those little clouds cross a face when someone (not every but some ones) learns I have a disabled son. If it is someone who has known me a while already it is just a momentary readjustment -but it is a readjustment all the same. It is, I think (caveat), why famous people suddenly become all "protecting-their-privacy" when a child has disabilities. The phot-ops are just so much less attractive. And suddenly they aren't someone you'd want to be because no one wants to join this club. As special as it is.

Seeing bugs

I took this picture almost 10 years ago. I didn't need reading glasses then. I was just really impressed that my new digital camera (a 41st birthday present) showed the little bugs I hadn't even realized were there. On reconsideration this should have been a clue. It wasn't cameras improving in this case. I suspect I wouldn't have been as impressed at the closeups in my 30s.

I was one who laughed (laughed!) at all those jokes about holding the menu farther away -that was just silly. And old women who thought some young man attractive -creepy. Groaning every time one got out of a chair -unnecessary! Ridiculous!

Why oh why didn't anyone tell me that I would still feel like a 13 year old even when I had gray hair? That I would still get annoyed with my mom for being critical and think my older sister was... well, my big sister? That grown children could be as exasperating as toddlers -that is if one can ever really consider them grown? Why did none of those older women tell me this? I tell all the younger women. And then I remember, vaguely, like the little bugs I didn't notice when I took the picture, that someone probably did mention something along these lines. There was some buzzing in the background but you know how silly old ladies can be.

scary world

... but a brother makes it less scary. How can you argue with a 18 year age difference now?

I was going to talk about what a mess the world is. And how depressed I get reading about what people find entertaining these days. Or how my mom complained that the other day when she said she was bored I turned the TV on to a cartoon for her to watch. That got a laugh -as she intended. Only she didn't add that I'd searched and searched for anything that wouldn't be offensive to some one born in 1918 -regardless of how open minded they had considered themselves (and I stayed with her to watch Kung Fu Panda and we both laughed at it -she skipped that too).

Also the van died and we don't exactly need another vehicle that seats 8 (even if only theorretically since we never really wanted to put 8 in that space not to mention we'd 'lost' one seatbelt years ago) but on the other hand crutches and walkers don't fit so well into anything else. And the sun has not been shining much and as the older brother in this picture used to say, "blah, blah, blah."

Then I looked for a picture from (just) yesterday to post and I saw some hope for the future again.

invisibility

There was a recent article in the WSJ on "invisible" disabilities. These are disabilities that you can't see. Sometimes I've heard them called "hidden"- same thing, slightly less dramatic. They are very terrible because no one can tell without you explaining... that it is very terrible. I knew all about them before the WSJ article about how these types of disabilities are costing schools more and more money. I knew because people think that 1) I'm much nicer than I am and 2) that my other half and I will sympathize even if we can't know how extra awful it is to have to explain to people that your child (or you) is disabled (but the hopeful sympathizee tries to explain that to me). Other than my height I have no real explanation for the first mistake but as for the second: let me take a whack at it.

Apparently some people think that with a visible disability the world is kinder and more understanding. Did these people not see the Hunchback of Notre Dame? Do they live some place where all the kids want to be best friends with the guy drooling in the wheelchair? Or even sit next to the kid with a stutter and a limp? If it was an option (and you know it is) would they have the word "disabled" helpfully tatooed on their child's (or their own) forehead?

And as for their additional burden of having to explain everything let me explain that seeing the CP doesn't explain anything. We still have to explain (and explain) everything all the time... no he's not as smart as Stephen Hawkin, no he couldn't walk witout the crutches if he really tried, yes he can hear you, -ask him yourself! Plus we don't just explain when we want people to know he has a disability and help would be nice (or not (which we also have to explain)). We have to explain to any random person who asks and to small children who point and stare and to sympathetic strangers. Or at least I have to if I want them to think I am much nicer than I am.

The picture goes with the rant because I took it on August 27th to show the flowers I had picked in preparation for Hurricane Irene -her rain is on the window. Or at least I think it goes with the rant but I'm not going to explain.

pet peeves

...no, actually I find this kinda endearing. When he did this when we were in our 20's and said, "take my picture." I just didn't get it (guyness was more of a mystery then) but when he still keeps doing it almost 30 years later how can I not at least try harder to look impressed? Clearly from his fashion sense it's not a vanity thing.

No, today's pet peeve is more of a statistics and probability thing. First there was the hurricane forecasts where they kept saying things like we were "overdue" for a big one. And now there is this plague-y movie saying basically the same thing for a really scary epidemic. Please understand that I am not saying the big plague, or the big hurricane aren't about to hit. But, unless we are talking earthquakes where no activity means a build up of pressure, in the land of probability a lack of events mean the missing events (probably) aren't that likely. As my advisor once said if the no. 22 (for example, I'm not picking on the number 22) ping pong ball isn't selected for a long run a true statistician doesn't think it has to come up next he* thinks someone swiped the no. 22.
The mechanisms for the next big plague sound plausible enough and many people much smarter and probably tenured think it's coming but what I still don't get is why they don't pay any attention to the fact it hasn't happened yet. I'm sure it's not because that doesn't sound nearly as important to fund and would make a movie even duller than today's blog.
Which reminds me seizures seem to be more like earthquakes than ping pong balls in lottery baskets and Caleb is about due. Shunt failures are somewhere in between ( a long spel of working means...it's working (see what I mean, no plot) but an even longer period could mean some wear and tear. I'm thinking we are in a sweet spot right now and it would be a good time to make travel plans.
If you read through this... thanks.

*the girl statisticians aren't playing the lottery

Earthquakes and Lightning

... and never do dream I will fall. Thank you Emmy Lou for understanding.

I really want to feel very sorry for myself. Very. First there was our romantic plans for just the two of us in CA -after that turned into nothinng but a streppy throat (medical term) I downgraded the anniversary plans. Besides this is one of those numbers that can't be true because I'm not even that old so how could my marriage be? We decided for a simple afternoon excursion on the sailboat, just us, our dear friends and Irene.

Poor me. Poor poor me. Does it really count that in between (that's when the summer comes for us) that we sailed and swam and beached and hiked and kayaked? No. And even if it did who knows if any of the necessary accouterments (spelling restrictions have been lifted due to the weather so no need to check that) will survive the weekend.

So I want to feel very sorry for myself since there really were earthquakes and lightning too. It's not at all fair that self pity is just so ruined by everybody else having pretty much the same week. Not fair at all.

hatched, 20 years apart

You'll have to trust me that they are brothers. Also trust me that they were having fun. The elder had refused to go out with us on a sail boat for some time but the kayaking (I'm guessing) has made him more open so this time when I asked him to come along he simply said yes. The idea of standing on the "V berth" in the bow was a trick the younger one had been perfecting and we'd discovered gave the fun of being on the bow without the necessity of holding on to him. And it worked for the eldest too -this was the first time he enjoyed sailing. Naturally on this outing the jib caught on a spar and tore making that giant sucking sound. Swoosh there goes the bank account into the hole in the water (i.e. the boat).

And can I complain? No. It is an embarassment of riches. I know it. Every day I know it.