5·2

a big black blob with just a speck of light in the middle.

what a stretch going back to early march. no blogging, possibly not much thinking, just the pounding of the task beating its drums at a pace that i feel i must keep up with. the drums are okay for just a short while, yet any extended drumming soon turns into a frenzy of attempting keep up and to just do, not be. all other sounds are swallowed up by the droning and anyone that gets in the way of my task must be against me and are insane for they seem to not be able to hear the drum beat.

the end result of this is that though i may have gotten things done, i’ve somewhat retreated into myself and sarah gets the raw end of the deal as the little gaps and breaks of time i have with her are clouded by the drum beat. i’ve also had poster ideas rejected, lost a job for a client as it was taking to long, and forgotten deadlines. all over, not good. oh, and i was informed by sarah and jehn that i’m not so good with relationships. loverly.

i do believe the drum beats have moved into the distance where i can still catch the beat when needed. i can hear other sounds and most of those sounds aren’t good sounds, sounds of not being pleased with my last two months. i’m not sure if i know how to appease those sounds. maybe i’ve lost some of my contemplative ability, trading the ability to see for an unending ability to do, though «do» is not satisfying to much of anyone. i feel dark and incomplete, off balance and a maybe i am staggering. i know i still need work, but i thought i had moved further than i suppose i truly have.

a big black blob with just a speck of light in the middle.

5.3

slightly less gloomy post: on my return ride this morning i watched 3 different groups of cyclists going out for a ride. all of them had armwarmers on. it was 64°F at the time. what is wrong with them? we are on the verge of it being almost too warm to ride in the mornings.

5.4

back to gloomy: it looks as if spencer has neurofibromatosis and we’ll know more after testing. good things to hang on to are:

First, severe complications are by no means inevitable. There is a natural tendency for medical literature to be "biased" towards the more severe cases of the disorder, making them seem more common than they actually are. This occurs, in part, because only the more severely affected people are likely to be reported to the medical community. For every severely affected person who comes to medical attention, there may be several mildly affected people who do not seek medical care.

Second, some complications appear early in life. Major bone deformities associated with the disorder are usually apparent in infancy. A child who is 5 years old and has only café-au-lait spots has escaped some severe complications. While many people will have some cosmetic impact from the condition, more often than not, the problems are easy to manage.

Third, virtually no one with the disorder gets every possible complication, and most of the severe complications are uncommon. Although the definition of a "severe" problem may differ from one person to the next, most people with NF1 live long and productive lives, free of life-threatening complications.

his large noggin, slightly bulgier eyes than the other kids, slow to walk/talk, café-au-lait spots and on and on — he fits the diagnosis well.

i suppose much of the worst is what we've already come to expect with learning disabilities and language problems. even so, maybe there won’t be much of that as he is quite smart and he may lean good compensation techniques. i’d say it is a good thing he is part of our family — i believe we'll be able to help him well. his 3 older sibings already care for him and model good behavior, and he’ll get pushed to move on as they ride and play more and more.

still, sarah cried most of yesterday and i only had time to first think of it much while riding home at night. i couldn't blame the cold morning air on making my eyes tear up. it probably wasn’t the safest way to ride a bike. now comes the unenviable task of letting all of our friends know.

i’m sure the lyrics have some other meaning, but today is a kate rusby day.

5.9

there is nothing like going out for a ride 10x the usually length and getting dusted by a 70 year old man. i am not where i want to be [especially not half a mile behind him on a hill]. it did jump start my metabolism and i believe i am shedding weight. add in that i went from riding 4.5 hours a week to almost 11 and that also changes the body. when i got home from my ride, i colored hair for 6 hours in the midst of another shoot out a half mile away [3 cops and a suspect shot] and then a nice dinner with friends which was mostly bland and not worth the price but it was great company. all through this, more phone calls with people asking about little spenglar. it is difficult for me to thing of him going through hardship and potential ridicule when he is the cutest of kids, loud and full of life. i had to excuse myself a few times during tuesday night while watching both jehn and chris play with him and the other kids. he IS a great kid, but will people see past what may soon become a less than attractive exterior? will he have learning disabilities that label him as «that kid»? will someone fall in love with him love him forever? i hurt for him, and watching people enjoy his laugh last night makes me want to hold him at this place forever [hopefully nobody comes into my office right now. allergies, yes, that is what i will say]. of course, as we are putting him to bed, sarah discovers a hard bump near the end of his spine. i am done with talking and reading about it, i would like to talk to some specialists about what we can do to helpi ask for the best for him.

he is smart, which adds hope for him in school. at our public library he was upset that he didn’t have a library card so he took a scrap piece of paper and made his own. i had to explain to the librarian when he tried to check out books with it.

over the weekend he asked how to get to lego.com so i wrote it out for him and he typed it in. the next day he handed sarah and i this sheet of paper. he amost got it correct.

5.14

oh, what a whirlwind trip to sedona, oak creek canyon, cottonwood, clarkdale, tuzigoot and jerome. i must remember to post some photos and tell everyone about it.

5.16

just for murray, an old shot of our recycled yellow dog.

5.21

this weekend spencer finally got over his fear and started riding his bike. he rides it non-stop and yells out «hank-hank» like a diesel locomotive. he rode so much on sunday that he put himself to bed and was asleep before we got to his room. everyone seems to be pitching in with getting sarah an ancient raliegh bike that mark is fixing up. it’ll be fun for us all to go riding this summer. spencer also has a loose tooth [he says it is broken] and that little men built his teeth. he is also adamant that sarah and i left him on the beach one time. he is a nut. he wanted to hold my dad’s hand yesterday and later he grabbed the hand of another man in a red shirt.

when my parents knocked on our door at 10+pm, i opened it with an exasperated «what do YOU want?» funny funny.

5.22

this really doesn’t work in all the cases but i don’t think it would be smart for anyone to say «oh, but it will work for me». having sex before having a full/mature/committed relationship