Thursday, August 23, 2007
tomorrow is mic-key day
Lars' procedure is tomorrow at 12:30; we have to be there by 11:45. If all goes well we'll be in & out (it's in a surgical area in case something goes wrong) with a brand new button & no more foot of tube hanging out of the belly for Lars to chew on, pop open, spill stomach contents all over from...these are near daily events. Also hoping the mic-key causes less skin breakdown. So grateful we've had the tube these past six months. Will let you know how it went.
Monday, August 20, 2007
Davis' farmland
Lars has a Davis' Farmland membership again this year & enjoys his trips very much. Feeling, petting, hugging, being nibbled by extremely friendly baby goats, sheep, calves... Way fun. Llamas, alpacas, chickens, donkeys, cows, pigs, turkeys, peacocks...lots of animals to listen to, a fabulous hayride with many tactile elements (hay, horns, horseshoes), and riding horses. The only place he's ever ridden a horse & loved it every time. He laid his face right down on the neck of the pony and laughed hysterically the entire time.
There's also a huge play area and a water/spray park which is great for Joa & company...Lars has fun catching the mist-filled breezes from the spray, but he's much more of a still water guy.
There's also a huge play area and a water/spray park which is great for Joa & company...Lars has fun catching the mist-filled breezes from the spray, but he's much more of a still water guy.
Thursday, August 16, 2007
mayn ketsele
Bubala rolled around on the floor tonight virtually purring in pleasure, getting his head scratched and rubbed. So beautiful and full of pure bliss and contentment, he reminded me of a cat in a sun streak, and a line from a Marge Piercy poem:
"You're a sponge for love, a recirculating fountain... 'Ravish me,' you say, 'with kisses and tuna fish, for I am your happy, long-haired id, and I know how to accept pleasure.'"
Ah Larsy.
"You're a sponge for love, a recirculating fountain... 'Ravish me,' you say, 'with kisses and tuna fish, for I am your happy, long-haired id, and I know how to accept pleasure.'"
Ah Larsy.
hot air balloon festival
Last weekend the boys & I went to the hot air balloon festival in Hudson 
Daytime was fun, but after the sun went down is when it got breathtaking. Lars with his CVI is able to use his what little vision he has best when everything around the periphery is totally dark and whatever he's looking at is brightly lit, colorful, and preferably large.
Well...guess what that makes the "balloon glow" event? About as perfect as you can get. He was so excited, not only by what he could see, but also by the cool sound that the fire made when they pulled those chords. They would glow for just a few moments, and then would need to cool down again. The anticipation...never knowing when it was going to happen...Hanging out... Larsy bliss.
Daytime was fun, but after the sun went down is when it got breathtaking. Lars with his CVI is able to use his what little vision he has best when everything around the periphery is totally dark and whatever he's looking at is brightly lit, colorful, and preferably large. Well...guess what that makes the "balloon glow" event? About as perfect as you can get. He was so excited, not only by what he could see, but also by the cool sound that the fire made when they pulled those chords. They would glow for just a few moments, and then would need to cool down again. The anticipation...never knowing when it was going to happen...Hanging out... Larsy bliss.
step-by-step feeding
What goes in is vanilla pediasure, which we get delivered by the case.
The bags are also delivered. We use one every 24 hours.
Pour the pediasure into the bag, do the special getting-the-air-out trick which includes priming the tubing (not pictured), & it looks like this,
hook it up to the electronic pump (rechargable battery), and set the pump for how many ml per hour it should drip (here 150),
and set it for how many ml total you'd like it to drip in before stopping (here 420).
Put it all together in the cute little backpack that's made to hold it all,
connect it with the tube that goes into Lars' belly,
hang the backpack & try to keep Lars from chewing on the tubing. Good to go.
The bags are also delivered. We use one every 24 hours.
Pour the pediasure into the bag, do the special getting-the-air-out trick which includes priming the tubing (not pictured), & it looks like this,
hook it up to the electronic pump (rechargable battery), and set the pump for how many ml per hour it should drip (here 150),
and set it for how many ml total you'd like it to drip in before stopping (here 420).
Put it all together in the cute little backpack that's made to hold it all,
connect it with the tube that goes into Lars' belly,
hang the backpack & try to keep Lars from chewing on the tubing. Good to go.
Joa, who has been feeling more than slightly possessive of his few-n-far-between loaves of white bread recently (swear I found it in the cupboard like that), won the 'rock star' costume contest at sailing camp last week. How could he not? 
More Joa at boating camp pics here. He did sailing last week in the mornings & was completely enthralled.
career ambitions
"Joa the firefighter" (or as he used to say, "VoVo fighterfighter") has been a theme for a number of years. Here's Joa at 3: 
And last week:
Joa & Monica were in Mike's truck. Mike's a real firefighter in Milford & Joa adores him.
And last week:
Joa & Monica were in Mike's truck. Mike's a real firefighter in Milford & Joa adores him.
bikes
Joa & Gannon learned to ride bikes this summer, thanks to Tamara. These shots of them are on the rail trail between our houses. 
Wednesday, August 15, 2007
morning musings
When I was out with Joa when he was an infant and toddler, people used to stop me in park, on the street, in the isles of stores and rave about how beautiful he was. In exchange for his beauty and radiant smile, they would gift him with their admiration and reflect back to him a smile of appreciation. He has stored in his self somewhere hundreds of these experiences. Sometimes I see them emerge in spontaneous resplendent moments. Sometimes I see him warp them into an “ain’t I cute? now give me what I want!” look.
Lars is not a cheap date, not a kid one can flirt with, wink & smile at, then move away from with the feeling of some kind of brief relationship having been established. If people want to relate to Lars, they have to invest in him. They have to give him their time, take a risk, offer themselves in a more committed way. For a proper meeting he requires their voice, hands, attention, and their open heart & mind. That’s a lot to ask in New England. Quite intimate. Quite rare. If people extend themselves in this way, he will give them everything he has in return.
The other day we had to bring Lars with us to couple’s counseling. So it came time to introduce him to our counselor. When people are as perplexed, stilted, and clueless as she was in that moment, we generally guide them by suggesting that he needs to hear their voice, and it would help if they could offer their hands to him to feel, that he knows people by their hands. A lot of folks are palpably hesitant to do this. Too close, too intimate.
Although he can absolutely feel and take in their hesitancy and rejection, these are some of the moments when I feel grateful that he can’t also see and ingest the looks they reflect back to him. Yes, blindness is a lack of information. All kinds of information. In those moments I wish I saw a little less.
Lars is not a cheap date, not a kid one can flirt with, wink & smile at, then move away from with the feeling of some kind of brief relationship having been established. If people want to relate to Lars, they have to invest in him. They have to give him their time, take a risk, offer themselves in a more committed way. For a proper meeting he requires their voice, hands, attention, and their open heart & mind. That’s a lot to ask in New England. Quite intimate. Quite rare. If people extend themselves in this way, he will give them everything he has in return.
The other day we had to bring Lars with us to couple’s counseling. So it came time to introduce him to our counselor. When people are as perplexed, stilted, and clueless as she was in that moment, we generally guide them by suggesting that he needs to hear their voice, and it would help if they could offer their hands to him to feel, that he knows people by their hands. A lot of folks are palpably hesitant to do this. Too close, too intimate.
Although he can absolutely feel and take in their hesitancy and rejection, these are some of the moments when I feel grateful that he can’t also see and ingest the looks they reflect back to him. Yes, blindness is a lack of information. All kinds of information. In those moments I wish I saw a little less.
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