march 17, 2007
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new anagrams up from past days (look in past anagrams)
03.07, 03.12, 03.13

holy farg getting so behind in things!
sorry!

thigns not in any particular order...my mkind is a jumble.

i made bread for the 1st time, and i also made meatloaf for the 1st time. both turned out delicious! i am pleased.

i cut matthew's hair. i did an ok job. i think he needs to get it fixed a little by a professional, tho.

i am ready for spring!
today it snowed.

my mom is still not very well ever since her surgery for cancer.
it's been all the complications after the surgery which have really scared me.
(and her!)

she is still eating ONLY through IVS :(
she hasn't eaten any real food via her mouth in a month!

she has an Iv straight to her heart and also a tube through her buttock.
god.

she is really discouraged but trying not to be.

insurance "amde" her leave the hospital and go home...still all hooked up with all this Iv equipment and stuff.
so she has home health care (who are very unhelpful) stop by every few days.
her husband has been having to fill in as nurse and figure out stuff that really should be done in a hospital on top of still doing his full time professing job at the college.

i'm going to stay with her the 1st week of april and take care of her.
i would have gone this whole month but she said she and steve were managing and i was busy with lili.
but i told her over and over i'd be there in a heartbeat if she needed me.

but to tell you the truth, i really DON'T know how on earth i am going to learn to hook up all her IV equipment and she has all these tubes in her that need to be irrigated a certain way and god, this is SERIOUS stuff.
i'm scared shitless of screwing it up and making her even more sick.

this is stuff not to mess with.
she has open wounds going right to the very center of her.
one little infection and she could be a goner or very seriously ill ,even more so.

it's all so scary.
it's hard to even think about.
i've been more than worried.

i don't talk about it much and i never write about it.
but ya...this is some very very fucked up shit.
i don't even know what to say about it all even now.
it's too intense to even write about because it's hard to even take in or process.

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today we went and got lili's hearing checked up and it's mostly ok except that her left ear is plugged with something and so she is probbaly not hearing all that well out of that ear.
this may be something that will clear up on its own so we are getting her retested in april.

something like 80% of people with down syndrome have hearing problems.

poor little bhush.

it was disapointing, frustrating and sad to hear from the woman who checked her ears to hear that funding for this woman to check the ears of children was cut back to basically nothing. so this woman had to get ALL her equipment for free.
she was set up in this little back room with old worn out stuff that needed to be duct taped together.

it made me angry to see that this was not getting funded and there is shit like the war going on and a million other unworthwhile cuses.

i asked her if there was anything she needed and she said "hearing aids"
apparently poor people are not being able to afford hearing aids for their children.
so poor children are going by in life being deaf for no good reason.

gah.

it would make me so mad if lili were ever one of these.

i must find a way to raise money.

but 1st this woman needs to make it easy for people to give money.
i said for her to start a website. get paypal. get a p.o. box so people can send cheques.
i said i'd help her.

she seemed happy i would help but a bit overwhelmed by my suggestions.
she said she should hire me as her administror.
if only i had the time i surely would.

there is so much to do in this world.

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m and i have decided that we cannot afford to have a new york honeymoon.
we will probbaly go and stay at my mom's cabin for free.

maybe somday we can go to new york.
but it makes me feel guilty to spend money on anything frivolous when there are children in this world not getting what they need.

i'm a friggin bleeding heart right now.

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i went to the "new parent's breakfast" that the down syndrome assciation invited me to.

i don't know why i got it inot my head that there would be pancakes there...but i did.
i took a $15 cab ride to some weird part of town and arrived with lili (M had to be at work so he could not go)

when i arrived there were about 7 other families there.
i felt like the oddball, as i usually do.

there were NO PANCAKES!
in fact, there really was almost no breakfast.

out in the hallways they had some really sad little bagels (if you could call them that) and a fruit tray of some sad melon and grapes.

it was ok.
i'm glad i went, in a way.
but it was mostly pointless for me.

i just don't fit in to this kind fo thing.
people were talking about their "grieving process" and of course their feelings are valid but it drives me nuts because i just don't get it.

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m just got home now....and i'm making a bath so i ahve to go

 

happy st patricks day!

 

sorry for such a disheveled anagram!