Wednesday, May 30, 2007

"Do not fear death so much but rather the inadequate life."

Bertolt Brecht
beautiful day. we've gone right into summer.
that's pgh. weather for you.
wait 10 minutes, it'll change again.

i think that's why so much of the local news is devoted to worshipping
at the shrine of the weatherman. ; )

Tuesday, May 29, 2007

there's some great poetry in the new edition of CITN

and i'm in there too!!!! ; )

give it a look and see what i mean.

thanks, sherry

Saturday, May 26, 2007

a little story about my father:

my dad was a BIG john wayne fan. he had tons of his movies
on vhs and recently, dvd.
he thought he was the greatest actor EVER.
( yes, i know) ; )

once when i stopped at my parent's he was getting ready to watch john wayne in
"gengis kahn" (oh lordy, if you've never had the experience, i say, "watch it, at least once, preferable with good friends and a few drinks!!!")

he wanted me to watch it with him. i did.
i chewed a tiny hole in my cheek trying hard not to laugh because i
didn't want to hurt his feelings by laughing as i watched it.

i did a grand job of it too.
almost lost it tho when my dad said "see, i told you he was the greatest. he can even be so real in this movie!"

i didn't realize until after we were done making the funeral arrangements that today
would have been john wayne's 100th birthday.

the duke has just met his biggest fan.
this is an old one, but i do count in 5's.
i am 55, my father was 85. he has just passed on.

a grateful "thank you" to all that said their prayers or sent good vibes
for a good passage on. sherry

i count in bundles of 5
another hour

another day
years i count in bundles of 5
50, going places i never wanted to be
doing things i never wanted to do
thinking things i never thought.

and THIS little piggy...

Friday, May 25, 2007

for froth cause his camera's having fits:

bob doing what he does best(besides eating)

quaker dave has put up
a poem for
memorial day at his site.

it is beautifully crafted and painful
in it's honesty.
a quiet afternoon.
birdsong and chipmunks a a few quarrelsome squirrels are the only sounds.
Q: What do you get if you cross a skunk with a bear?

A: Winnie the Pooh!

( yeah i know, it stinks! ho, ho! )

Thursday, May 24, 2007

(Traditional, Arranged by Bob Dylan)
1978 Music Corporation of America, Inc

There is a house down in New Orleans
They call the risin sun.
Its been the ruin of many a poor girl
And me, oh God, Im one.

My mother was a tailor
She sewed these new blue jeans
My sweetheart was a gambler
Down in New Orleans.

Now the only thing a gambler needs
Is a suitcase and a trunk
And the only time he's satisfied
Is when he's on a drunk.

He'll fill his glasses up to the brim
And he'll pass the cards around
And the only pleasure he gets out of life
Is ramblin from town to town.

Oh tell my baby sister
Not to do what I have done
But shun that house in New Orleans
They call the risin sun.

And it's one foot on the platform
And the other foot on the train
Im goin back to New Orleans
To wear my ball and chain.

Im going back to New Orleans
My race is almost run
I'm goin back to end my life
Down in the risin sun.

There is a house in New Orleans
They call the risin sun.
Its been the ruin of many a poor girl
And me, oh God, Im one.

man, almost missed this!
thankfully i checked in at quaker dave's.


last time i tried it i was worth about 200 bucks!


My blog is worth $10,161.72.
How much is your blog worth?

haven't been in the right place inside myself
to write anything yet so as you can tell,
i've been finding poems to share with you.

i figure if i like the ones i've posted maybe you will as well.
at least, i hope so. : )
A Man I Knew

by Margaret Levine

has a condo

a maid who comes
every other week

kids who won't

are on the dresser
they float forever

like a boat
going to 86 today!
wow, that's hot even for a little blue woman like me!

Wednesday, May 23, 2007

by Edgar Allan Poe

Romance, who loves to nod and sing
With drowsy head and folded wing
Among the green leaves as they shake
Far down within some shadowy lake,
To me a painted paroquet
Hath been—most familiar bird—
Taught me my alphabet to say,
To lisp my very earliest word
While in the wild wood I did lie,
A child—with a most knowing eye.

Of late, eternal condor years
So shake the very Heaven on high
With tumult as they thunder by,
I have no time for idle cares
Through gazing on the unquiet sky;
And when an hour with calmer wings
Its down upon my spirit flings,
That little time with lyre and rhyme
To while away—forbidden things—
My heart would feel to be a crime
Unless it trembled with the strings.

sunset, last night.

Requiem for the Croppies
by Seamus Heaney

The pockets of our greatcoats full of barley...
No kitchens on the run, no striking camp...
We moved quick and sudden in our own country.
The priest lay behind ditches with the tramp.
A people hardly marching... on the hike...
We found new tactics happening each day:
We'd cut through reins and rider with the pike
And stampede cattle into infantry,
Then retreat through hedges where cavalry must be thrown.
Until... on Vinegar Hill... the final conclave.
Terraced thousands died, shaking scythes at cannon.
The hillside blushed, soaked in our broken wave.
They buried us without shroud or coffin
And in August... the barley grew up out of our grave.
by Seamus Heaney

Fishermen at Ballyshannon
Netted an infant last night
Along with the salmon.
An illegitimate spawning,

A small one thrown back
To the waters. But I'm sure
As she stood in the shallows
Ducking him tenderly

Till the frozen knobs of her wrists
Were dead as the gravel,
He was a minnow with hooks
Tearing her open.

She waded in under
The sign of the cross.
He was hauled in with the fish.
Now limbo will be

A cold glitter of souls
Through some far briny zone.
Even Christ's palms, unhealed,
Smart and cannot fish there.
it's a beautiful morning.
the birds are singing and my chipmunks
are chipping and i had a bunny at my feeder as well as the regular squirrels and birds and chipmunks.

Tuesday, May 22, 2007

got this just now in an e-mail from pud'n boy.
this was the pittsburgh of my youth.
i spent a lot of(a LOT of)time downtown n@
from 67 to around 71. this brought back a lot of memories.
pud'n and GL are around my daughter's age. their memories
are far different than mine but i know a lot of people
will read this and smile. i am.


The 1960's started with the Pittsburgh Pirates winning the World Series over the New York Yankees in 1960.

The final phase of the Parkway West project was completed as the Fort Pitt tunnels open on September 1, 1960. Prior to the opening of the tunnels motorists had to exit the Parkway West and go via the West End Circle and go across the point bridge to get to downto wn Pittsburgh.

Civic Arena opens in 1961 and many events take place in the new arena. Ice Capades, Ringling Brothers Circus, WWWF wrestling and many concerts took place during the 1960's. The Beatles, Elvis Presley and Frank Sinatra all performed there. In the late 60's KQV radio would present its "Shower of Stars" concert series where you got to see 4 or 5 acts. Pittsburgh Penguins hockey was also played at the civic arena in the 60's.

Interstate 79 connecting Erie with Washington, PA, is completed by the late 1960's.

The Bridge to Nowhere is finally completed in 1969 just in time for Three Rivers Stadium to open. The bridge was started in the early 60's and then a few years went by before it finally was completed in 1969.


Shopping in the 1960's w a s way different from the way it is today. Downtown Pittsburgh was the main shopping area and most people went downtown once or twice per month. Most took the Gradison bus into town and back.

Downtown Pittsburgh was a fun place to go in the 1960's. Downtown had all the major department stores including Kaufmann's, Horne's, Gimbels, Woolworth's, Murphy's, and McCrory's. For teens downtown Pittsburgh was a regular weekend hangout as many would go to the various movie theaters or to the local record stores. National Record Mart actually had 3 different locations in downtown in the late 60's, Sam Goody Record Store was also downtown.

In the 1960's there were numerous menswear and ladies' wear stores, shoe stores, jewelry stores and book stores.

In 1962 shopping malls started to pop up around Pittsburgh. Northway Mall on McKnight road was the first shopping mall in Pittsburgh. South Hills Village came in the mid 1960's and Monroeville Mall in 1969.

There were also many popular shopping centers in the 1960's around Pittsburgh. Miracle Mile shopping center in Monroeville, Great Southern shopping center in Bridgeville, West Hills shopping center in Moon Township, Northern Lights in Baden, Crafton Ingram shopping center in Crafton and Ingram, Southland Shopping Center in Pleasant Hills, just to name a few.

Besides the major downtown department stores, Pittsburg h had Grant's, Murphy's, Woolworth's, Kresge, McCrorys, Zayre, Gee Bee, Sears, and J.C. Penny.

Electronics and appliance stores started to pop up in the 1960's in Pittsburgh. Kelly & Cohen was probably the most popular with Radio shack, Olson Electronics, Lafayette, Clabers and popular furniture stores Hahn Furniture and Buyer's Mart all carrying appliances, TVs, and stereos.


Eating out was not as popular in the 1960's as it is today. The average family only ate out about 3 times per month. There were far fewer restaurants to go to back in the 60's and the ones that were around were generally locally owned and not part of a chain.

Some of the bigger name Pittsburgh restaurants of the 1960's were the LeMonte, Pat McBrides, Johnny Garneau's, Tambellini's, Tonidale and Teddy's restaurant.
< BR>In the 60's there were also places that had a floor show along with dinner. The two main places were the Holiday House and the Twin Coaches. Popular acts such as the Lettermen, Tony Bennett, Bobby Vinton and others would be featured. As rock and roll became more popular with adults these places started to become less popular.

Eat'n'Park and Howard Johnson's were the two most popular family restaurants in the 1960's King's Family Restaurant first ope ned in 1967 but only had one or two locations.

Fast food was quite different in the 1960's. We had McDonald's but they were few and far between. Pittsburgh also had Burger Chef, Winky's, Sandy's, Arby's, Kentucky Fried Chicken, and some local pizza shops.

Dairy Queen and Tastee Freeze were all over the place in the 1960's along with a ton of other soft ice cream stores. Isaly's and Bard's were the two places to get the bes t milk shakes, sodas and sundaes. These stores also carried lunch meat and a few groceries and some locations were even small restaurants.


Grocery shopping was much different too in Pittsburgh during the 60's. The main stores were Kroger, Thorofare, Loblaws, A&P, Giant Eagle, a ton of local independent markets.

One big difference in the 60's was there were no generic or store brands. No one offered double coupons, as a general rule there were very few coupons available in the 60's. Trading stamps were the big thing in the 60's when you bought groceries or gasoline. There were 3 stamp redemption stores in Pittsburgh in the 1960's, these included Top Value Stamps, S&H Green Stamps, and Plaid Stamps. You had to fill up a stamp book and then you looked in their catalog to see how many books yo u needed to get what you wanted. By the late 60's you could pay $5 and that would equal a book. Most people didn't realize this stamp collecting was a real rip-off as the items in the catalog were really high in price based on $5 per book.


In the 1960's there was no cable TV, no DVD or VCR's, no cell phones, no CD's, so what did kids do for fun? Weekends and evenings in the summer were spent going to little league games or local dances put on by various civic groups. Amusement parks were very popular as Kennywood Park was just really coming into its own during 60's. One thing that is different now compared to then is that they had a swimming pool at Kennywood. White Swan Park near the airport and West View Park in the North Hills were also popular hangouts.

West View Danceland was a real popular place during the 1960's as well as the Linden Grove, the White Elephant and the Lebanon Lodge. Downtown Pittsburgh had the Staircase Lounge which was one the most popular downtown lounges.

Pittsburgh Pirates baseball games were very popular in the 60's mainly because you could get in for $1.50. In the summer swimming pools were popular, two of the favorite places were Raccoon State Park and Mineral Beach on Route 88 near Finleyville. Roller skating and ice skating were popular during t he 60's. Nort h Park, Neville Island, Bridgeville, and Canonsburg all had nice rinks. There were also a lot of bowling alleys and pool rooms in the 60's.


By 1960 Pittsburgh already had TV stations come and go. KDKA Channel 2, WTAE Channel 4, WIIC Channel 11 and WQED Channel 13 were all on the air. The original WPGH and Dumont Network were gone by 1960.

Local news was a big part of Pittsburgh television in the 1960's. KDKA had Bill Burns and Paul Long as their two main newsmen, Joe Denardo on weather. WTAE had Dave Murray and Carl Ide on news and Eleanor Schano on weather. Eleanor actually wore a negligee as she did the weather in the early 1960's. WIIC had Adam Lynch, Alan Boal and Mark Schaffer as their newsmen and By Willia ms on weather. Joe Tucker, Ray Scott, and Tom Bender were all well known sportscasters in the 1960's in Pittsburgh. Jean Connelly, Bill Cardille, Marie Torrie and Don Riggs were all household names in the 1960's on Pittsburgh TV. Pittsburgh offered a number of very popular local shows Rodney and Kinish hosted by Hank Stohl on KDKA TV was a popular children's show. Adventure Time with Paul Shannon on WTAE featured a live studio audience of children and had a nice variety of cartoons and The Three Stooges. Ricki Wertz hosted the Ricki & Copper show as well as Jr. High Quiz, and Romper Roo m had a local ver sion on WTAE. Cooking with Kay Newman and the Captain Jim show aired on WIIC TV as well as Give it a Whirl, a local game show hosted by Steve Rizen. Perhaps the most popular show on WIIC was Studio Wrestling hosted by Bill Cardille.
< BR>WQED, Pittsburgh's educational channel, had The Children's Hour with Josie Carey and in 1967 started Mister Roger's Neighborhood. WPGH signed on again as Channel 53 around 1966 or so. The station aired mostly reruns, movies and syndicated shows, but it did pick up and air network shows that the main affiliates did not run. Dark Shadows was the most popular show aired by WPGH in the late 60's. Teen and young adult shows such as the Ed Hurst Show from Philadelphia, Playboy After Dark and Roller Derby were all on the Channel 53 lineup in the 60's. WSTV from Steubenville came in pretty strong in much of Pittsburgh and in the early to mid 60's a popular dance show called Nine Teen Time aired with Wayne Van Dyne and Stan Scott as the hosts. WSTV was a combination of CBS and AB C af fil iates and would air kinescopes of prime time shows on the weekends. This gave many of us a chance to see a show that we would not have been able to see because another family member wanted to watch something else. In the 60's most households only had one TV set and there were no cable channels on the air. By the late 1960's most of the local stations started broadcasting the local shows in color and by 1970 just about everything was in color.

In the 1960's in Pittsburgh you really only had 5 choices for TV and no remote control, if you wanted to change the channel you had to get up and manually change it. Many people also had to move the rabbit ears antenna for each channel as well. By 1968 the average Pittsburgher had a color TV.


Pittsburgh radio in the 1960's offered very little choice compared to what we have today. KDKA Radio was by far the top station with its Cordic & Compa ny mor ni ng show hosted by Rege Cordec. Ed Schaunssey did the morning news and popular DJ Clark Race hosted the afternoons and talk show hosts Ed and Wendy King did a late evening talk show. The Ed & Wendy King show was one of a kind as you never heard the caller's voice. In 1968 Jack Bogut came aboard as morning show host and other staff members included Art Pallan and Terry McGovern. Mike Levine handled the evening talk show when Pirates baseball did not air. KDKA played top 40 music during the 1960's but did not air any real heavy rock. KQV was the top choice for teen listening in the 1960's. DJ Chuck Brinkman was the first real popular disc jockey for KQV among young listeners. Dave Scott, Hal Murray, and Steve Rizen were all on the KQV staff in the 1960's. In 1967 Jim Quinn joined the staff as the night jockey (The Leader) as he called himself took the city by storm and was Pittsburgh's most popular Jock in t he late 19 60's. Fred Winston and Kris Erik Stevens also were on the KQV staff in the late 60's. KQV played top 40 music but still had 10 minutes of news each hour and a full commercial load, something that would have no chance of success today. WWSW-AM 970 was a top five station in the market and was a full service Pop adult station. "Double double" as the station was known as played no rock & roll music at all. The popular artists of the 40's & 50's who were still active on the easy listening charts were the artists played on WWSW. WCAE AM 1250 became WTAE in the mid 60's and was a full service adult station. Very little rock & roll was aired and a lot of focus around the morning show hosted by Al Jazzbeau Collins. WJAS started the 60's as a pop music station but switched to middle of the road by the time the Beatles hit in 1964. In 1968 the station switched to an all-talk format and became quite popular. Merle Pollis, Ted Payne, Perry Marshall, and John Cigna all bec ame house h old names. WEEP radio started the 60's as a rock and roll station but switched f ormat in the mid 60's to country music. The station also had a controversial morning host named Jack Wheeler.

WAMO served the black community well back in the 60's as it has done since it signed on the air. Porky Chedwick was very popular on WAMO in the 1960's as well as Brother Matt, Sir Walter (John Christian) and Hal Brown. FM radio was non-existent in the 1960's in Pittsburgh. Most FM stations just played background music.

WDVE, which was KQV's FM station came into existence in 1969. The station was automated much of the day and played album rock cuts. The station was not popular until a number of years later.

please check out the new edition of the poetry kit magazine #9

it's a great read:

Monday, May 21, 2007

All things appear and disappear because of the concurrence of causes and conditions. Nothing ever exists entirely alone; everything is in relation to everything else.

the buddha

something for my father
Artist: Spongebob Squarepants

Song: Spongebob (Theme Song)

Are you ready kids?
aye aye Captian
I can't hear you!
aye aye CAPTAIN!!!
Who lives in a pineapple under the sea?
Sponge bob square pants
Absorbant and yellow and porous is he
Sponge bob Square pants.
If nautical nonsense be something you wish
Spongebob square pants
Then drop on the deck and flop like a fish
Sponge Bob Square Pants
Spongebob Squarepants Spongebob Squarepants
Spongebob Squarepants Spongebob Squarpants!
ha ha ha ha ha ha ha do do do do do do do do !

for mai
by Lewis Carroll

'Twas brillig, and the slithy toves
did gyre and gimble in the wabe.
All mimsy were the borogoves,
And the mome raths outgrabe.
"Beware the Jabberwock, my son!
The jaws that bite, the claws that catch!
Beware the Jubjub bird, and shun
the frumious Bandersnatch!"
He took his vorpal sword in hand:
Long time the maxome foe he sought-
So rested he by the Tumtum tree,
And stood a while in thought.
As in uffish thought he stood,
The Jabberwock, with eyes of flame,
Came whiffling through the tulgey wood,
And burbled as it came.
One, two! One, two! And through and through
The vorpal blade went snicker-snack.
He left it dead, and with its head
He went galumphing back.
"Has thou slain the Jabberwock?
Come to my arms, my beamish boy!
O frabjous day! Calloh! Callay!
He chortled in his joy.
'Twas brillig, and the slithy toves
Did gyre and gimble in the wabe:
All mimsy were the borogoves,
And the mome raths outgrabe.
"You got to be careful if you don't know where you're going,
because you might not get there."

Yogi Berra

Sunday, May 20, 2007

well, what a wonderful surprise awaited me im my e-mail
my old friend mick from liverpool wrote.
mick appears and disappears sometimes for a year or so
and then just pops up in my mail with something interesting and
i have a few of mick's poems on the beginnings of my blog here.
you can check the archives. it's worth it.
mick is an artist and he also writes, poetry, screen plays and songs and has been in
bands for ages. he is also a first class rebel and
that's fine by me! he's a pip!
anyway, mick's in a new band, give them a listen and see what you think:


this is for my friends and for my fellow pk'rs that
have never been here.

i have some great news.
the club that i belong to and that i am a
member on the scholarship committee is going to be
able, with the assistance of the ladies auxiliary,
to give out 9 scholarships next month!

that is just fantastic and i have to thank
the executive board and the membership for
their support in our fund raising efforts
and for the luncheon to award the scholarships.

they are five hundred dollars each to be used
as the winners see fit in their education.

Friday, May 18, 2007

yep, to me, it's poetry:


(Words and Music by Bob Dylan)
1962 Warner Bros. Inc
Renewed 1990 Special Rider Music

How many roads must a man walk down
Before you call him a man?
Yes, 'n' how many seas must a white dove sail
Before she sleeps in the sand?
Yes, 'n' how many times must the cannon balls fly
Before they're forever banned?
The answer, my friend, is blowin' in the wind,
The answer is blowin' in the wind.

How many times must a man look up
Before he can see the sky?
Yes, 'n' how many ears must one man have
Before he can hear people cry?
Yes, 'n' how many deaths will it take till he knows
That too many people have died?
The answer, my friend, is blowin' in the wind,
The answer is blowin' in the wind.

How many years can a mountain exist
Before it's washed to the sea?
Yes, 'n' how many years can some people exist
Before they're allowed to be free?
Yes, 'n' how many times can a man turn his head,
Pretending he just doesn't see?
The answer, my friend, is blowin' in the wind,
The answer is blowin' in the wind.

you can always write.
feedback welcome
hi boag, hope sara is feeling better!

Ducks and Elephants

Why do ducks have webbed feet?
To put out fires.

Why do elephants have flat feet?
To put out burning ducks.
rain, rain, RAIN!!!!!

i think i'm growing moss.

it's not easy being green!

Wednesday, May 16, 2007

some people may wonder how i can post 2 such different
poets as these 2 on the same day but i
believe that is the best way to get people thinking.
how different were these men? how might they have been similar
if at all. not in their poems but as men as human beings.
how did they come to believe life was what it was, for them
for all of us?


On The Treasury of the True Dharma Eye

Midnight, No waves,
no wind, the empty boat
is flooded with moonlight.

On Non-Dependence of Mind

Coming, going, the waterbirds
don't leave a trace,
don't follow a path.

Translated by: Stephen Mitchell
From: The Enlightened Heart, An Anthology of Sacred Poetry
warning, this next bukowski is pure bukowski.


gotta love this!



Tuesday, May 15, 2007

some of you may remember the post i did on this.
well, a very kind person has sent a site with photos from the
memorial dedication:

go look. and thanks much for the site. : )

Memorial Honors Indian Massacre Victims



SAND CREEK MASSACRE NATIONAL HISTORIC SITE, Colo. (April 28) - More than 142 years after a band of state militia volunteers massacred 150 sleeping Southern Cheyenne and Arapaho Indians in a misdirected act of vengeance, a memorial to the tragic event was officially dedicated Saturday...

The more one worries, the older one gets; the more one laughs, the younger one feels."

Chinese proverb
oh, and please, go vote today.
i voted before my haircut. there were only 2 of us there.
come on, you can't bitch if you don't vote.

just came back from getting my hair cut.
i feel so much better now. had to get about an inch and a half cut off.
i like my hair short. plus, it is going up to 85 today.
then storms, then cooler.
pittsburgh weather. always messing with your head!
by Sylvia Plath

Kindness glides about my house.
Dame Kindness, she is so nice!
The blue and red jewels of her rings smoke
In the windows, the mirrors
Are filling with smiles.

What is so real as the cry of a child?
A rabbit's cry may be wilder
But it has no soul.
Sugar can cure everything, so Kindness says.
Sugar is a necessary fluid,

Its crystals a little poultice.
O kindness, kindness
Sweetly picking up pieces!
My Japanese silks, desperate butterflies,
May be pinned any minute, anesthetized.

And here you come, with a cup of tea
Wreathed in steam.
The blood jet is poetry,
There is no stopping it.
You hand me two children, two roses.

Monday, May 14, 2007

A girl from Pittsburgh and a girl from the west coast were seated side by side on an airplane. The girl from Pittsburgh, being friendly and all said, "So, where ya from?"

The west coast girl said, "From a place where they know better than to use a preposition at the end of a sentence."

The girl from Pittsburgh, sat quietly for a few moments and then replied: "So, where ya from.... bitch?"

Forward if you're a Pittsburgh Girl...

i decided posting this was better than forwarding the e-mail.

i laughed! ; )

"if you aren't TOO afraid..."

; )
no poems today, at least, not now.

just some facts on learning disability

LDs are common in NF1.

Brothers Adam and Neil Pearson
who appeared on the BBC1
programme "When your face
doesn't fit"

may is neurofibromatosis awareness month

they have found that it is
1 in every 3000 births for NF1 since this article was
Neurocutaneous syndromes are genetic disorders that lead to abnormal growth of tumors in various parts of the body. These disorders usually first appear as skin lesions like birthmarks, but can eventually lead to tumors that affect the central nervous system and other parts of the body. While some conditions can be diagnosed at birth, others don't produce symptoms until later in life.

These diseases are caused by the abnormal development of cells in the earliest stages of an embryo's development. Although there is no cure for any of the neurocutaneous syndromes, treatments are available to help a child manage the symptoms and any health problems that they can cause.

What Are the Types of Neurocutaneous Syndromes?
There are several neurocutaneous syndromes, but the most common ones that involve children include:

neurofibromatosis, types 1 and 2 (NF1 and NF2)
Sturge-Weber syndrome
tuberous sclerosis (TS)
ataxia-telangiectasia (A-T)
von Hippel-Lindau disease (VHL)
Symptoms vary widely from condition to condition, and they affect different kids in different ways. Often, the full effects of these diseases - even if they are detected at birth - do not emerge until the child grows up. The educational, social, and physical problems that the conditions cause must be managed throughout a child's life.

Neurofibromatosis is one of the most common neurocutaneous syndromes. It can cause tumors to grow on a child's nerve cells, producing skin changes, bone deformities, eye problems, and other complications, particularly in the brain.

Neurofibromatosis is usually inherited, but up to half of new cases occur because of changes (mutations) within a person's genes. Once a mutation has taken place, the changed (mutant) gene can then be passed on to succeeding generations. The child of a parent with neurofibromatosis has a 50% chance of having the disease.

There are two different kinds of this disorder, neurofibromatosis type 1 (NF1) and neurofibromatosis type 2 (NF2). NF1 accounts for approximately 90% of all cases.

Neurofibromatosis Type 1
NF1 occurs in about 1 in 4,000 babies born in the United States. When diagnosing NF1, doctors typically take a thorough medical history because children with NF1 often have a parent with the disease. NF1 is also known as von Recklinghausen disease.

The classic sign of NF1 is a skin pigment problem known as "café-au-lait" spots. These light brown, coffee-colored patches may be present at birth and may look like freckles at first. The spots increase in size and number during the first few years of life. A child diagnosed with NF1 will usually have at least six café-au-lait spots that are larger than freckles.

Another common sign of NF1 is the presence of Lisch nodules, tiny, benign (noncancerous) tumors found on the iris of the eye. In rare cases, tumors can develop along the optic nerves and affect a child's vision. During puberty, benign tumors called neurofibromas develop on or under the skin or along the nerves of the body. Bone deformities also may develop.

Treatment of a child with NF1 focuses on managing the symptoms. If a child has complications involving the eye, nervous system, spine, or bones, he or she will be referred to an appropriate specialist for treatment. In cases where these neurofibromas are causing chronic pain, growing into vital body organs, or causing infections, the growths can be removed through surgery.

Children with NF1 also have a high incidence of seizures, learning disabilities, attention deficit disorder, and speech problems. Therapy and specialists are available to manage those symptoms.

Neurofibromatosis Type 2
Neurofibromatosis type 2 is less common. It occurs in about 1 in 40,000 births. Kids who have this disease typically develop tumors on the auditory nerves (the nerves leading to the ear).

The symptoms of NF2, which typically appear in the teen years or early twenties, can include hearing loss, ringing of the ears, and problems with balance. Different treatment options are available to help a child manage these problems.

Tuberous Sclerosis
Tuberous sclerosis, or TS, is a disorder that causes benign growths called tubers to form on several different body organs, including the brain, eyes, kidneys, heart, skin, and lungs. It occurs in approximately 1 in 6,000 births. There is a 50% chance that the child of a parent with TS will have the disease.

The condition is often first recognized when a child has seizures or shows developmental delays. The severity of TS symptoms vary greatly between kids, ranging from mild skin abnormalities to mental retardation or kidney failure.

Treatment of TS usually includes medication to prevent seizures, treatments to address skin problems, surgery to remove tumors, and the management of high blood pressure caused by kidney disease.

Sturge-Weber Syndrome
Sturge-Weber syndrome is a rare condition that affects the skin and the brain. It is caused by a spontaneous genetic mutation. It is not passed down by parents who carry the disease. Because it frequently goes undiagnosed, it is difficult to estimate how many people currently have the disease.

Each case of Sturge-Weber is unique and symptoms vary widely from child to child. The most visible marker of the disease is a facial birthmark or "port wine stain" that appears when the child is born. It usually covers at least one upper eyelid and the forehead area.

Sturge-Weber syndrome can lead to neurological problems, including unusual blood vessel growths on the brain called angiomas. These growths often cause seizures that begin before a child's first birthday and can worsen with age. A child also may experience convulsions on the side of the body that's opposite from the port-wine stain.

About 30% of patients with Sturge-Weber also develop glaucoma (increased pressure inside the eye that impairs vision), typically in the eye that is affected by the port-wine stain. That eye might also be enlarged (a condition called buphthalmos). Some kids who suffer from this disease also experience strokes.

Treatments, medications, and surgery can help a child cope with the health problems associated with the disease.

Children as young as 1 month old who have Sturge-Weber can undergo laser treatment to reduce or remove port-wine stains. Anticonvulsant medication may be used to control seizures associated with the disorder, and surgery is available to control glaucoma and vision problems.

Ataxia Telangiectasia
Ataxia telangiectasia is a progressive degenerative disease that involves a large number of major body systems. It is a recessive genetic disease, meaning that both parents carry the gene that could combine to cause A-T in their children but do not have the disease themselves. Two parents with the mutated gene have a 25% chance of having a child affected by A-T.

A-T is usually noticed in the second year of life as a child develops problems with balance and slurred speech caused by ataxia (lack of muscle control). The ataxia occurs because the cerebellum, the part of the brain that controls muscle movement, is degenerating. Eventually, the lack of muscle control becomes severe enough for the child to require a wheelchair.

Another symptom of A-T is the appearance of tiny, red, spiderlike veins in the corners of the eyes or on the ears and cheeks when exposed to sunlight. The veins are known as telangiectases, and they are harmless.

About 70% of children with A-T also have immune system problems that make them more susceptible to chronic upper respiratory infections, lung infections, and pneumonia. Children with A-T are also very susceptible to developing certain cancers, such as leukemia and lymphoma.

Currently, no treatment is available for A-T and there is no way to stop its progression. But treatment is available to help kids manage their symptoms. Physical therapy and occupational therapy may help maintain flexibility, and speech therapy can help address slurring and other speech problems. Special medications may be given to help enhance weakened immune systems.

Von Hippel-Lindau Disease
Von Hippel-Lindau disease, or VHL, is a genetic disorder involving the abnormal growth of blood vessels. It usually occurs in certain areas of the body, such as the brain and other parts of the central nervous system, the retina of the eye, the adrenal glands, the kidneys, or the pancreas. The prevalence of the disease is unknown, but the child of a parent who carries the gene that causes VHL has a 50% chance of having the disorder.

Blood vessels usually grow like branches on a tree, but in kids with VHL, the vessels form small tumors called angiomas. Doctors carefully monitor angiomas because, depending on where they are located, they can cause other medical problems. For example, angiomas on the retina of the eye may lead to vision loss.

Symptoms of VHL typically appear when a person is between 10 and 30 years old. VHL is diagnosed using a special imaging technique called magnetic resonance imaging (MRI) or a computerized tomography (CT) scan. A thorough physical examination and blood tests are also performed.

The symptoms of VHL, which depend on the size and location of the angiomas, can include headaches, balance problems, dizziness, weakness, vision problems, and high blood pressure. Fluid-filled cysts or tumors (benign or cancerous) may develop around the angiomas, worsening these symptoms. People with this disorder have a higher risk of developing cancer, especially kidney cancer.

VHL treatment will depend on the size and location of the angiomas. The goal of treatment is to treat the tumors while they are small and before they put pressure on any of the major organs, such as the brain, or on the spine. Surgery may be required to remove the tumors before they create severe problems.

The prognosis for VHL patients depends on the location of the tumors and the complications they cause. Fortunately, early detection and treatment can improve a child's treatment outcome.

Caring for Your Child
The illnesses associated with neurocutaneous syndromes can place enormous stress and emotional burdens on you and your child, and it is easy to feel overwhelmed. Early intervention is important to helping your child achieve the best quality of life possible.

The focus of treatment is to prevent or minimize complications and maximize the child's strengths. Keep in mind the following tips:

Positive reinforcement can strengthen your child's self-esteem and foster a sense of independence. Let your child find out what he or she is capable of, especially when performing daily living skills.
Support groups for you and your child can be extremely beneficial, so seek out local chapters that address your child's particular illness (for a partial listing, click on the Additional Resources tab). Not only do these groups provide a supportive social environment, they also are a great way to share knowledge and resources.
Psychotherapy or other supportive treatments can boost your child's self-esteem and coping skills, so ask your child's treatment team for appropriate referrals. Therapy also can help you and other family members deal with the stress involved in caring for a child with a chronic illness or disability.
Physical, occupational, or speech therapy can help your child improve some of the developmental delays caused by his or her specific illness.
Check with your local hospital or university for seminars or informational classes about neurocutaneous syndromes. By educating yourself and your family members, you can become a valuable resource in your child's long-term treatment.
A number of medical professionals may care for your child during diagnosis and treatment. These professionals can include a family practitioner, pediatrician, neurologist, neurosurgeon, orthopedic surgeon, oncologist, and ophthalmologist. A genetic counselor also may help by providing you with information about genetic testing and the risk of passing the disease on to another child.

Remember that although each of these conditions is challenging, supportive therapies and treatments are available to help both you and your child.

Reviewed by: Marcy E. Yonker, MD
Date reviewed: August 2005

sunny monday, but quite chilly.

layla doesn't care one bit tho!

Sunday, May 13, 2007

just got the best mom's day present of all.
my little sweetie called(well, her mom dialed)

and i got a very enthusiastic and LOUD
"happy mother's day!"


my kid.
well, this is what she looked like years ago! ; )

Saturday, May 12, 2007

Number 8

by Lawrence Ferlinghetti

It was a face which darkness could kill
in an instant
a face as easily hurt
by laughter or light

'We think differently at night'
she told me once
lying back languidly

And she would quote Cocteau

'I feel there is an angel in me' she'd say
'whom I am constantly shocking'

Then she would smile and look away
light a cigarette for me
sigh and rise

and stretch
her sweet anatomy

let fall a stocking

Friday, May 11, 2007

A Flower Given to My Daughter
by James Joyce

Frail the white rose and frail are
Her hands that gave
Whose soul is sere and paler
Than time's wan wave.

Rosefrail and fair -- yet frailest
A wonder wild
In gentle eyes thou veilest,
My blueveined child.

Thursday, May 10, 2007

Raw With Love
by Charles Bukowski

little dark girl with
kind eyes
when it comes time to
use the knife
I won't flinch and
i won't blame
as I drive along the shorealone
as the palms wave,
the ugly heavy palms,
as the living does not arrive
as the dead do notleave,
i won'tblame you,
i will remeber the kisses
our lips raw with love
and how you gave me
everything you had
and how I
offered you what was left of
and I will remeber your small room
the feel of you
the light in the window
your recordds
your books
our morning coffee
our noons our nights
our bodies spilled together
the tiny flowing currents
immediate and forever
your leg my leg
your arm my arm
your smile and the warmth
of you
who made me laugh
little dark girl with kind eys
you have no
knife.the knife is
mine and i won't use it
Sway With Me
by Charles Bukowski

sway with me, everything sad --
madmen in stone houses
without doors,
lepers steaming love and song
frogs trying to figure
the sky;
sway with me, sad things --
fingers split on a forge
old age like breakfast shell
used books, used people
used flowers, used love
I need you
I need you
I need you:
it has run away
like a horse or a dog,
dead or lost
or unforgiving.

Love 'em or hate 'em, it's Pun time. Puns, or "groaners" like some folks like to call them are fun. Try 'em on your friends and relatives, but keep a straight face when you tell them and be preapared for GROANS... then you'll see why they are called so... enjoy and pass 'em on!

Energizer Bunny arrested; charged with battery.
A man's home is his castle, in a manor of speaking.
A pessimist's blood type is always b-negative.
My wife really likes to make pottery, but to me it's just kiln time.
Dijon vu: the same mustard as before.
Practice safe eating: always use condiments.
I fired my masseuse today. She just rubbed me the wrong way.
A Freudian slip is when you say one thing but mean your mother.
Shotgun wedding: A case of wife or death.
I used to work in a blanket factory, but it folded.
I used to be a lumberjack, but I just couldn't hack it, so they gave me the ax.
If electricity comes from electrons, does that mean that morality comes from morons?
A man needs a mistress just to break the monogamy.
Marriage is the mourning after the knot before.
A hangover is the wrath of grapes.
Corduroy pillows are making headlines.
Is a book on voyeurism a peeping tome.
Dancing cheek-to-cheek is really a form of floor play.
Banning the bra was a big flop.
Sea captains don't like crew cuts.
Does the name Pavlov ring a bell?
A successful diet is the triumph of mind over platter.
Time flies like an arrow. Fruit flies like a banana.
A gossip is someone with a great sense of rumor.
Without geometry, life is pointless.
When you dream in color, it's a pigment of your imagination.
Condoms should be used on every conceivable occasion.
Reading whilst sunbathing makes you well-red.
When two egotists meet, it's an I for an I.


Why is it that no matter what color bubble bath you use the bubbles are always white?

got this as part of a "why?" e-mail just now.

i'd LOVE pink bubbles or lavender or baby blue!

just got my newsletter from them

the new stats are out.

1 in every 3000 births for NF1. : (

i was reminded of this song while on a political blog.

i like this version i found on youtube.
oh, i took the little dancing cartoon of myself down because it was
annoying the hell out of me so i know it HAD to have made others crazed!

; )

my smallest dogwood (lucy)
blossomed today.

thought i'd share. ; )
went to visit my little granddaughter last night.
she has a new sandbox.

i'm STILL trying to get sand from under my nails.
i think i washed the rest away but with sand
being flung everywhere, who knows? : )
XVII (I do not love you...)
by Pablo Neruda

I do not love you as if you were salt-rose, or topaz,
or the arrow of carnations the fire shoots off.
I love you as certain dark things are to be loved,
in secret, between the shadow and the soul.

I love you as the plant that never blooms
but carries in itself the light of hidden flowers;
thanks to your love a certain solid fragrance,
risen from the earth, lives darkly in my body.

I love you without knowing how, or when, or from where.
I love you straightforwardly, without complexities or pride;
so I love you because I know no other way

than this: where I does not exist, nor you,
so close that your hand on my chest is my hand,
so close that your eyes close as I fall asleep.

Wednesday, May 09, 2007

thought this was cool!

Roses And Rue by Oscar Wilde

(To L. L.)

Could we dig up this long-buried treasure,
Were it worth the pleasure,
We never could learn love's song,
We are parted too long.

Could the passionate past that is fled
Call back its dead,
Could we live it all over again,
Were it worth the pain!

I remember we used to meet
By an ivied seat,
And you warbled each pretty word
With the air of a bird;

And your voice had a quaver in it,
Just like a linnet,
And shook, as the blackbird's throat
With its last big note;

And your eyes, they were green and grey
Like an April day,
But lit into amethyst
When I stooped and kissed;

And your mouth, it would never smile
For a long, long while,
Then it rippled all over with laughter
Five minutes after.

You were always afraid of a shower,
Just like a flower:
I remember you started and ran
When the rain began.

I remember I never could catch you,
For no one could match you,
You had wonderful, luminous, fleet,
Little wings to your feet.

I remember your hair - did I tie it?
For it always ran riot -
Like a tangled sunbeam of gold:
These things are old.

I remember so well the room,
And the lilac bloom
That beat at the dripping pane
In the warm June rain;

And the colour of your gown,
It was amber-brown,
And two yellow satin bows
From your shoulders rose.

And the handkerchief of French lace
Which you held to your face -
Had a small tear left a stain?
Or was it the rain?

On your hand as it waved adieu
There were veins of blue;
In your voice as it said good-bye
Was a petulant cry,

'You have only wasted your life.'
(Ah, that was the knife!)
When I rushed through the garden gate
It was all too late.

Could we live it over again,
Were it worth the pain,
Could the passionate past that is fled
Call back its dead!

Well, if my heart must break,
Dear love, for your sake,
It will break in music, I know,
Poets' hearts break so.

But strange that I was not told
That the brain can hold
In a tiny ivory cell
God's heaven and hell.

Tuesday, May 08, 2007



run, run for your lives...

i'm in the mood, doesn't get any better that this baby!

oohhhh yes!

there is a mourning dove cooing outside my window.
i wish i could share it.

but i can share this...

i think this beautiful in it's simplicity.
"It took me a long time not to judge myself through someone else's eyes."
--Sally Field

Picture Puzzle Piece
by Shel Silverstein

One picture puzzle piece
Lyin' on the sidewalk,
One picture puzzle piece
Soakin' in the rain.
It might be a button of blue
On the coat of the woman
Who lived in a shoe.
It might be a magical bean,
Or a fold in the red
Velvet robe of a queen.
It might be the one little bite
Of the apple her stepmother
Gave to Snow White.
It might be the veil of a bride
Or a bottle with some evil genie inside.
It might be a small tuft of hair
On the big bouncy belly
Of Bobo the Bear.
It might be a bit of the cloak
Of the Witch of the West
As she melted to smoke.
It might be a shadowy trace
Of a tear that runs down an angel's face.
Nothing has more possibilities
Than one old wet picture puzzle piece.

i read this and the thoughts started weaving
"what ifs...?"

what chain of events lead up to, what series of things could the loss of that piece set into motion?

what happens if the writer walks away from that old wet puzzle piece or bends to pick it up????

could it affect you, me?
could it bring world peace or the end of time?

i could spend all day with those thoughts
then again, maybe not.


yeah, you are! : )
beautiful morning.

Monday, May 07, 2007


They speak of the art of war,
but the arts
draw their light from the soul’s well,
and warfare
dries up the soul and draws its power
from a dark and burning wasteland.
When Leonardo
set his genius to devising
machines of destruction he was not
acting in the service of art,
he was suspending
the life of art
over an abyss,
as if one were to hold
a living child out of an airplane window
at thirty thousand feet.

by Denise Levertov
USA (1923-1997)