ugh, shouldnt have written this mass e-mail in the first place
some of you may already know but for those who dont
on tuesday jet's genetic test came back. she tested positive for spinal muscle atrophy
from www.fsma.org (fyi this is something that can be screened for, but isnt routinely)
Type I Acute (Severe)
Type I SMA is also called Werdnig-Hoffmann Disease. The diagnosis... Read More
maybe this is a little weird to do this in an e-mail. maybe tomorrow i'll work on a phone tree. i'm home now at 1:30 am and it seems like the quickest was to disseminate info.
jet was hospitalized friday nite. she stopped breathing, we dont know why or for how long - tho we dont think for too... Read More
I imagine the trip in the hospital was quite numbing and shocky.
I had a RSV baby and i just remember it all being such a blur. beep, buzz, ding, knock....ahhhhhh
I can't say that I have ever been on a memorable train. I think I should try it some time.
oh my goodness, i meant to change this journal loong loong ago.
hmmm
i was gonna write something about how lazy i am specifically in regards to my personal appearance.
i think it may become more noticable as i get older.
i'm used to just throwing clothes on, not thinking about it and still getting attention on the street.
i used to dye my hair... Read More
Bah, just random thoughts and existential (or really self) angst ...pay no attention I'm just writing it down to get it out
This was my day yesterday
Afterbirth was going to play baseball in Prospect Park. Wave and I decided to tag along. It was a beautiful day. Prospect Park was beautiful. I love Brooklyn, its less crowded and more humane feeling than Manhattan. We... Read More
i kind of feel guilty at times for trying to put my needs before others..
sometimes i fail at it.
i give you props though, you are far less selfish than i am.
even though you may not realize it...
what you are feeling is very natural, i think the majority of people go through this to a certain extent,
wanting to take care of others but sometimes feeling resentment for being put in the position of being an
enabler.
shit, that was one longass run on sentence, forgive me?
shit
here we are going away again
and i havent updated
theres a lot to say but i dont know if i feel like it
i've been a mixture of depressed and frenzied
makes for lots of dreams even if not much sleep
we're driving to cleaveland tonight
we'll be back
the humidity is down to 84% this morning and compared to yesterdays 96% it feels like the desert
I loved meeting our SG friends so much, I just wished they lived closer.
Last night we saw a racoon. This morning our birdfeeders are empty and in dissarray.
Afterbirth's mom is coming on friday. How to prepare....
laundry, general cleaning, figure out what we're all... Read More
oh my goodness yesterday was a big day
did laundry
went grocery shopping
hung out with my lovely sister
had a 5 hour picnic in a cenatary a block from my house
this place is amazing, all the bodies are underground in crypts, there are no headstones so its a half acre grass field hidden in the middle of a city block. not too many... Read More
So when and where? We arrived back fresh from seattle today. We are going to the brockton fair on sunday night if you are down and available. It is the oldest traveling carnival in the U.S.
Women are people. The things women do--like having babies and nursing them--are *human rights*. They are not "options" or "choices" that some wacky individuals make, like owning Siberian tigers as pets. Anything that interferes with women's abilities to fulfill their *human functions*--including having... Read More
How did you like "Lost in translation"?
i think its a great little film...
D and I leave for seattle next sunday and we are coming back friday morning...
i was kind of hoping from a visit from you two that weekend, but now i'm not sure whats going on over there..
what cool things you say. i want to meet you, too! (and am also of the want what i want when i want it ilk, even though i'm an invalid and should simply be forever grateful and beholden ). let's just assume we'll make it happen, m'dear.
Tomorrow is another day.......
oh wait, thats today
or is it?
its officially summer (well not according to the calendar but according to my sensabilities)
and i think its ShellyMC's birthday today.
i just realized my husband didnt know i'm an RN
despite not having a job, i went to school and passed that damn test
he thought i was an LPN or something.
maybe if he read my journal last year.......
Friday
JULY 21, 2006 @ 12:57 AM
macadamia nuts are overrated and i like nuts
almonds, roasted especially
peanuts, walnuts,... Read More
). let's just assume we'll make it happen, m'dear.
... yeah... I'm cool with that. I love you, my darling!