RANTINGS OF A MAD WITCH

Tripp died tonight

2012-01-15T03:32:00.005-04:00

Tripp, a very special 2 year old boy who battled an ugly illness, died tonight.

His blog is "EBing a Mommy:The challenging yet rewarding journey of caring for my son with EB".

He died at 2 years 8 months, and he had a strange/rare illness named EB for short... Tripp was born on May 14, 2009.

He was diagnosed with a rare genetic skin disease called Epidermolysis Bullosa "EB." Any type of friction on his skin or mucous membranes causes blisters. He was not supposed to live beyond a year.

Rest in Peace, Little Drummer Boy.

The Brave Little Soul
By: John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?"

God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone."

The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!"

God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.

In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love.

Priorities became properly aligned.
People gave from their hearts.
Those that were always too busy found time.
Many began new spiritual journeys, some regained lost faith - many came back to God.
Parents hugged their children tighter.
Friends and family grew closer.

Old friends got together and new friendships were made.
Distant family reunited, and every family spent more time together.
Everyone prayed.
Peace and love reigned.
Lives changed forever.

It was good.
The world was a better place.
The miracle had happened.
God was pleased.

~

Take a Moment to Understand Special Needs Parents

2012-01-15T01:51:00.004-04:00

This was a post by someone with a similar situation... Sums up many things we go through. Keeping it here so I don't loose it.

"Parents of special needs kids get so fed up with having to deal with people who may not be uncaring but simply don't take the extra moment to understand. We are connected to our children in ways that other parents cannot understand. We know without anything being said just what is needed at any given moment. We learn to anticipate what will happen next.

We become educated in the legal,medical,and government arenas more than some people who have degrees in those fields. We learn to fight the fight and go into battle with a smile on our faces because we have to not because we want to. We learned the hard way just what must be sacrificed in order to get the care and attention our children need. We learned to give more of ourselves to that child than we would ever conceive of giving to another human being. We not only live it,eat it,sleep it, we also dream it.

Our lives are consumed by the care of our children. Our lives don't exist except for the care of our children. Everything we do revolves around what may be needed next for that child. We have been humbled,humiliated, felt guilty,made ashamed, brought to the point of begging at times,made angry,made determined,driven to the point of desperation,all for the sake of our children.

We have sat in hospitals for days,weeks,months praying that our child makes it one more day,praying that our child lives long enough to know how much we love them,stood the onslaught of surgeries that could be life threatening,procedures that could make the situation worse,been through treatments that would make a grown man cringe,all in an attempt to make our children better. We have died a little inside every time our child cries from the pain of all these things.

We have dispensed more medication than a pharmacy could hold. We have tried every crazy experiment, every suggestion made,every piece of equipment,every new medication,every strange idea on the hope that it might work. We have dealt with quacks,conmen, inexperienced people,uncaring individuals,rudeness,and cruelty toward our children. We have lost everything,sold everything, traded everything in the pursuit of help for our children.

We have given up friendships,family, relationships,and marriages all for our children. We have other children that have given up parts of their lives for this child. Children who never complain while they do without so this child may have something needed. We have learned to be realistic people.

We know how bad the situation can get and that we may lose our children before their time yet we hope for that one cure that will make it all go away and give us our lives back. We hope that we can help another parent or people in the future by sharing our ideas, thoughts,angst,miseries,hopes and dreams. We have been made strong by the honor of being in the presence of a child with the courage to face more needles, more doctors,more surgeries, more treatments and procedures with a smile on their face.

We have stood strong when our children have lost the battle and gone before their time. We say we are okay all the time when inside we are struggling to make it one more day. We know the potential our children have,we see their abilities as well as their limitations when they go through the procedures,treatments, surgeries,and struggle to accomplish even the smallest tasks. We are made strong by seeing the courage,determination and –most of –the hope in that child’s face every day. We do this EVERY SINGLE DAY of our lives.

So PLEASE do not treat us as if we do not know what we are talking about. We have learned to face down worse tragedies,more complicated messes,and deal with more situations than you can imagine. We have been bent, sometimes broken,medicated, treated,depressed,angry,sad,and most of all a little fearful of the future.

We have slayed more dragons,conquered more worlds, invented more items,discovered more truths,and all for a smile when that child is happy. We are diplomats, advocates, fighters, unlicensed doctors,therapists, surgeons,nurses. We are a formidable force to be dealt with when it comes to our children. We have neglected our spouses,other children,housework,jobs,friends, family,society,and our own health because we have been busy in the pursuit of a better life for our children.

So do not think that we are incompetent –instead remember that we are soldiers in the battle for a better life. We are more focused on which battles to pursue. Not for ourselves but for a person who cannot do it for themselves.

So listen to us when we speak because we know what we are talking about. Don’t talk down to us,respect the fact that we are caregivers of the most special people in the world. We have an honor you will hopefully never receive,we earned it the hardest way possible,and we carry that badge of honor with us in every single thing we do,every word we speak,and every action we take.

May God Bless"

by Anonymous Parent of Special Needs Kid

For all sick kids in the world

2011-12-27T00:21:00.001-04:00

Prayer of St. Francis de Sales, Be at Peace:
Do not look forward in fear to the changes of life; rather look to them with full hope as they arise. God, whose very own you are, will deliver you from out of them. He has kept you hitherto, and He will lead you safely through all things; and when you cannot stand it, God will bury you in his arms. Do not look forward to what may happen tomorrow; the same everlasting Father who cares for you today will take care of you tomorrow and every day. Either He will shield you from suffering, or He will give you unfailing strength to bear it. Be at peace, then, and put aside all anxious thoughts and imaginations, and say continually:
"The Lord is my strength and my shield; my heart has trusted in Him and I am helped. He is not only with me but in me and I in Him."
Amen.

2011-12-23T15:22:00.001-04:00

To keep in mind for Kali's 2nd b-day:
Step2 Up & Down Roller Coaster Ridehttp://www.blogger.com/img/blank.gif

Megaland Pop-Up Playset - Indoor Play Tents, Tunnels, and Balls

Stormy thoughts

2011-11-16T02:51:00.002-04:00

Pumpkin stuff

2011-10-25T23:28:00.002-04:00

PUMPKIN BURGER
Whisk together beaten egg, chili and garlic powder and cinnamon. Combine mashed black beans, canned pumpkin, rolled oats and the egg mixture to form a mixture that is sticky yet holds together. Shape into patties and bake in a 375° oven, turning once, for about 15 minutes. Assemble with burger fixings.

TRIFFLE
Season the canned pumpkin with pumpkin pie spice (or a mixture of ground cloves, cinnamon and ginger) and pure vanilla extract, then fold in marshmallow cream. Layer in a trifle bowl with crushed graham crackers and candied pecans.

FLAN
* 6 large eggs
* 6 large egg yolks
* 1 3/4 cups sugar
* 1 teaspoon orange zest
* 2 1/3 cups heavy cream
* 1 cup milk
* 5 whole cloves
* 3 whole star anise
* 1 cardamom pod, cracked
* 1 teaspoon vanilla extract
* 1 15-ounce can pumpkin purée
* special equipment
12 6-ounce ramekins

Whisk eggs, egg yolks, 3/4 cups sugar, and orange zest in a large heatproof bowl. Bring 2 cups heavy cream, milk, cloves, star anise, cinnamon sticks, and cardamom pod to a simmer in a large saucepan over medium heat; slowly whisk into egg mixture. Steep 30 minutes. Strain. Whisk in vanilla extract and pumpkin purée. Chill 3 hours.

Stir 1 cup sugar and 1/4 cup water in a small heavy saucepan over low heat until sugar dissolves. Increase heat; boil without stirring until syrup is deep amber, brushing down sides of pan with a wet pastry brush and swirling pan occasionally, about 10 minutes. Stir in 1/3 cup heavy cream (caramel will bubble vigorously). Divide caramel among ramekins; chill until set. Divide custard among ramekins; place in a large pan. Add hot water to pan to come halfway up sides of ramekins; cover pan with foil. Bake at 350° until center is just set, 20–25 minutes. Chill until cold. Invert onto plates.

PUMPKIN BREAD
* 1 cup butter or margarine, softened
* 3 cups sugar
* 3 eggs
* 3 cups all-purpose flour
* 1 tablespoon baking powder
* 1 1/2 teaspoons baking soda
* 1 1/2 teaspoons ground cinnamon
* 1 1/2 teaspoons ground cloves
* 1 1/2 teaspoons ground nutmeg
* 1 (16 ounce) can solid pack pumpkin

In a mixing bowl, dream butter and sugar. Add eggs; mix well. Combine dry ingredients; stir into creamed mixture just until moistened. Stir in pumpkin. Pour into two greased 9-in. x 5-in. x 3-in. loaf pans. Bake at 350 degrees F for 1 hour or until bread tests done.

Origami Witch Pumpkin Spider Bat and Cat

2011-10-12T18:44:00.003-04:00

Witch

Pumpkin

Spider

Bat

Cat

My Pumpkin Beverage

2011-10-12T18:39:00.002-04:00

1/2 cup pumpkin
1 vanilla ice cream bar
1 cup milk
ice
1/4 water
2 tablespoon Splenda
cinnamon
cap of vanilla

Mix it all in blender.
Serve with top with cool whip.

This makes 1 serving 14oz.

Budin de Calabaza, my way

2011-10-12T18:31:00.002-04:00

So, my aunt finally gave me the recipe for her budin de calabaza. I tweaked it to my taste and came out with this:

1 pumpkin can (3.5 cups of mashed pumpkin)
2 cups milk
4 eggs
2 tablespoons salt
1.5 cup Splenda
2 tablespoons butter
2 tablespoons cinnamon
1 tablespoon ginger
1 tablespoon almond
1 tablespoon vanilla
1 handful almonds
1 box raisins

Heat oven 450.
Mix it all.
Put mix on a pan (you should put some sugar in the pan and melt is before pouring the mix... I placed some more Splenda on the pan and since it did not melt well kept going and placed mix over it).
Place in oven.
450 for first 15 minutes
325 for 45 minutes

Check if it is thick. Use wood stick, if nothing sticks to it then it's done.
Take out. Let it get cold.
Cover & place in the fridge.
Serve chilled with Cool Whip.
Yum!

DO IT ANYWAY

2011-09-17T20:25:00.000-04:00

“People are often unreasonable and self-centered. Forgive them anyway.
If you are kind, people may accuse you of ulterior motives. Be kind anyway.
If you are honest, people may cheat you. Be honest anyway.
If you find happiness, people may be jealous. Be happy anyway.
The good you do today may be forgotten tomorrow. Do good anyway.
Give the world the best you have and it may never be enough. Give your best anyway.
For you see, in the end, it is between you and God. It was never between you and them anyway.”
― Mother Teresa

9/11 Conspirancy Theory

2011-09-15T21:57:00.002-04:00

The Duck

2011-07-15T22:31:00.002-04:00

Talk about a BLAST from the PAST!

2011-07-13T08:15:00.001-04:00

AVISPAS!

2011-07-13T07:42:00.001-04:00

STUFF TO DO WITH GRANDS MUFFINS

2011-04-20T21:56:00.006-04:00

I put these here so I can find them later. Really bad memory and too much papers in my desk problems. :P And who knows, maybe you all can take advantage and try these which are idiot proof and fast solutions when you have an oven... I cook everything in microwave, this week only for the sake of trying to do some fishy cooking I will use the big tin monster... Yup, the STOVE! Tadaaaaa! Anyway, I came across these and before I loose them I put them here. I'm a sucker for food in the shape of all-in-one-pockets.

PIZZA CUPS:
Roll the biscuits out so they fit better in the pan, bake them for a few minutes, take them out of the oven, fill them with pizza ingredients and bake some more.

BACON, EGG & CHEESE CUPS:
Get GRANDS biscuits, and put them in a greased muffin pan, form a cup in the middle and put the egg in the center and bake 15-20 minutes. If you want, put the bacon in there as well, but it would be that hard to cook it and then add it later. Sprinkle cheese on top of the egg when it comes out of the oven.

Cooking good? PAELLA VALENCIANA

2011-04-20T15:54:00.002-04:00

I have eaten plenty of paella before at my aunt's house, but I have NEVER actually done it. So, I placed the paella in the shopping list for Holy Week, and hubby got it. This is my next culinary experiment.

PAELLA:
Get items out of the box. Follow the 3 easy-step instructions. Hope for the best!

So far so good, at least the apartment smells like paella! LOL I also put some fish sticks in the oven, and some broccoli and corn cobs in the microwave. I just have to finish the mayoketchup, and serve. Wow, this is not a boring menu! How come I didn't think of this while pregnant? (Yup, with Kali it was tilapia with broccoli 7 times a week... no wonder right now I hate tilapia!).

Cooking good? PAN DE AGUA

2011-04-19T21:48:00.003-04:00

And today I made my first attenpt in my life to make... tadadaaaaaaaa! Pan de agua boricua.

9:40PM I just put it in the oven... let's see what happens.

Off the bat, maybe once a month, but it is just too much work for a piece of bread... Wow, puts in perspective all the work that bakers do. Kudos to those diligent people that everyday wake up at 3:00am just to make bread... Without them, coffee would be so incomplete!

This was the recipe:

PAN DE AGUA

Time: 3 hrs. Serves: 4

Ingredients:

3 cups of all-purpose flour
2 1/2 (.25 ounce) packages active dry yeast
1 teaspoon of salt
1 cup of warm water
Preparation:

Dissolve the yeast in the warm water. Mix in flour, salt. Add the yeast and mix in with a spatula until it is well blended. Flour a clean surface and knead the dough until it is smooth and elastic (same texture as children modeling clay).

Wrap in a plastic film and let rise in a warm place until it doubles.
Put the dough on a floured surface and punch down to get rid of the excess bubbles. Divide the dough in 8 portions.
Work them into rolls, then slash them lengthwise with a knife.
Allow to double again before baking.
Pre-heat the oven to 218 °C (425 °F).
Oil a baking sheet.
Bake bread for 15 to 20 minutes, or until golden brown.

MY EXPERIENCE
This seemed simple and somehow became tricky... I don't cook, I just do cakes, so bear with me. Mixing the dough gave me trouble as I was not certain if I had to use all 3 packets of .25oz each or if it had to be just .25oz overall. Bad start... Mixed all and saw no difference when I left the mass alone... Separated the pieces and still saw no difference in growth... Maybe it's me or I am definitively doing something really wrong. Placed the dough in the oven, forgot oiling the baking sheet... We'll see what happens. I'm tempted to throw some pieces of butter over it... LOL

10:15PM:

Not bad for a first time. :)

Changing Education Paradigms

2011-04-08T18:03:00.001-04:00

The Surprising Truth About What Motivates Us

2011-04-08T17:58:00.002-04:00

How school kills creativity

2011-04-08T17:56:00.001-04:00

HARRY POTTER GOES ON

2011-04-02T21:47:00.000-04:00

PENSAMIENTOS EN CUARESMA

2011-03-28T12:02:00.004-04:00

2011-02-09T21:31:00.000-04:00

DEXTER & HOUSE & SPARTACUS

2011-02-09T03:16:00.004-04:00

There seems to be some hope for TV. Just finished the 2nd season of Dexter and I absolutely love it. The whole monster living among us concept is so compelling. It actually is ironic that so many normal people like this... or sick? In a way, watching real life, real events, you would expect people to like/enjoy lighter stuff... Us, people with dry witty humor and that see beauty in darkness definitively can enjoy this for the whole social criticism it is.

Same counts for House, who ironically seems like a medical duplicate of one of my best friends... Well, House treats/cures people, my friend treats/cures computers... Close enough. Resistance is futile!

Spartacus still grabs my attention. This 2nd season- so-called prequel is so far ok... Still, Lucy definitively disappointed me in her choice for character portraying... I thought she was classy-er. Just my opinion. I still don't see the value of so many explicit sex scenes on the screen, especially when you can show them with creative coverups... But then I guess they would loose male viewers...

The good news: I am actually looking forward to catch up on these three, as I used to feel when watching Xena, Herc, Andromeda, or even the A-Team... The bad news: It is sad that sex takes over a good script.

10-4

I DO LOVE CAKE! SO, HERE!

2011-02-08T18:15:00.003-04:00

OUR 4th ANNIVERSARY

2011-02-04T00:09:00.000-04:00

My All Time Favorites: Harlock & Emeraldas

2011-02-01T20:11:00.004-04:00

The Deliberate Dumbing Down of America

2011-02-01T00:08:00.003-04:00

EL HOMBRE QUE BUSCABA...!!

2010-08-04T14:01:00.000-04:00

En una conversación, un HOMBRE le hace a una MUJER la siguiente pregunta:

- ¿Qué tipo de hombre estás buscando?

Ella se queda un momento callada, y luego le preguntó:

- ¿En verdad quieres saber?

- Sí, respondió él.

Ella empezó a decir:

- Siendo mujer de esta época, estoy en una posición de pedirle a un hombre lo que yo no podría hacer sola.

Tengo un trabajo y pago todas mis facturas.

Me encargo de mi casa sin la ayuda de un hombre, porque soy económicamente independiente y responsable de mi administración financiera.

Mi rol ya no es el de ama de casa dependiente de un hombre.

Más bien, yo estoy en la posición de preguntarle a cualquier hombre,

¿qué es lo que puedes aportar en mi vida?

El hombre se le quedó viendo. Claramente pensó que ella se estaba refiriendo al dinero.

Ella sabiendo lo que él estaba pensando, dijo:

- NO me estoy refiriendo al dinero. Yo necesito algo más.

Necesito un hombre que luche por la PERFECCION en todos los aspectos de la vida.

Él cruzó los brazos, se recargó sobre la silla y mirándola le pidió que le explicara ese detalle.

Ella dijo:

Yo busco a alguien que luche por la perfección mental, porque necesito con quién conversar, no necesito a alguien MENTALMENTE SIMPLE.

Un hombre que luche por la perfección financiera, porque, aunque no necesito ayuda económica, preciso de alguien con quien coordinar los dineros que entren en nuestras vidas.

Yo busco un hombre que luche por su INDIVIDUALIDAD, que tenga la libertad para salir a volar y regresar responsablemente a su nido, porque
enriqueciéndose a sí mismo tendrá algo maravilloso que regalarme cada día.

Un hombre suficientemente sensible para que comprenda los momentos que yo paso en la vida como mujer, pero suficientemente fuerte
para darme ánimos y NO DEJARME CAER............

Estoy buscando a alguien a quien yo pueda respetar, partiendo del respeto que él mismo se gane con el trato, el amor y la admiración que me dé.

La mujer debe ser compañera del hombre, ni menos ni más... Para que juntos forjen una vida en donde la convivencia los lleve a la felicidad.

Cuando ella terminó de hablar lo vio a los ojos, él se veía muy confundido y con interrogantes.

- Estás pidiendo mucho, le dijo él.

Ella le contestó: "YO VALGO MUCHO"

Referencias

2010-07-18T13:19:00.003-04:00

KALISTO's BIRTH

2010-06-29T14:19:00.005-04:00

And my Warrior Empress is born!

Kalisto Beatrix (Kali)

Get to know her adventures and see more pictures of her in her own diary: www.KalistoMedina.blogspot.com

Mommy's rants about everything Kali at the blog www.ANewMageInTheFamily.blogspot.com

~V~

Immigration debate enters a kiddie phase

2010-05-21T17:39:00.002-04:00

Wow, talk about straight to the point...
Immigration debate enters a kiddie phase

YOU LEARN

2010-05-20T23:35:00.000-04:00

Ooh, ooh, ooh...

I, recommend getting your heart trampled on to anyone, yeah
I, recommend walking around naked in your living room, yeah

Swallow it down (what a jagged little pill)
It feels so good (swimming in your stomach)
Wait until the dust settles

You live you learn, you love you learn
You cry you learn, you lose you learn
You bleed you learn, you scream you learn

I, recommend biting off more than you can chew to anyone
I certainly do
I, recommend sticking your foot in your mouth at any time
Feel free

Throw it down (the caution blocks you from the wind)
Hold it up (to the rays)
You wait and see when the smoke clears

You live you learn, you love you learn
You cry you learn, you lose you learn
You bleed you learn, you scream you learn

I, I, oh, oh

Wear it out (the way a three-year-old would do)
Melt it down (you're gonna have to eventually, anyway)
The fire trucks are coming up around the bend

You live you learn, you love you learn
You cry you learn, you lose you learn
You bleed you learn, you scream you learn

You grieve you learn, you choke you learn
You laugh you learn, you choose you learn
You pray you learn, you ask you learn
You live you learn

-Alanis Morissette

Some old fashioned wisdom...

PAYASO PUERTORRIQUEÑO EN BELARUS

2010-03-15T12:24:00.001-04:00

Primer payaso portorro en Belarus. A la verdad que estamos en tó. :P

VOTE FOR SMA!

2010-01-22T18:04:00.001-04:00

LAST CHANCE TO VOTE!!! Please vote for SMA, help us find the cure! Take 20 seconds to help Deedee and thousands of kids like her. Go to http://www.voteforsma.com, "Become a Fan", then "Vote for Charity" Chase Bank will donate $1 million to the charity with the most votes this Friday. VOTE NOW!

House Executive Producer Garrett Lerner Talks About Spinal Muscular Atrophy: What You Can Do to Help

2010-01-22T18:02:00.000-04:00

House Executive Producer Garrett Lerner Talks About Spinal Muscular Atrophy: What You Can Do to Help

WHAT'S UP

2009-12-21T20:51:00.002-04:00

Just finished my AIO Web Design Diploma with straight A's, thank-u very much! My place for my design work is Katabolic Designs. Go ahead, visit... And then gimme some work! Referrals are also welcome.

Been trying to keep a fair Xmas spri even if collectors kept calling up demanding payment and implying I'm an irresponsible lazy excuse-maker. It is my fault that I have no job, after all. Knowing absolutely nothing about what happenned, and not caring to know anyway, stupidity reigns rampantly and the debt collectors keep on as the Repo-man of our lousy times. How you pay when you don't HAVE cash to pay? Lovely calls on Xmas week... Well, no matter what you say, no matter the tales of realism or fiction, the point is that there is no job, there is no money, there is a terminally ill child with 24/7 care involved, and there is no further help. Luckily the child has everything she needs as the government takes care of it, but us parents are left playing jugglers while tightrope walking... There is no empathy or pity towards us, because we are considered irresponsible for not working and for not paying debts... No matter that we were forced to leave our lives behing to save a life, no matter that I've been in contact with all debt companies sending them letters and not hiding any fact from them, no matter how good and truthful I have been about every detail... Merry Xmas.

I hope I can go bankrupt soon. I need a lawyer... I know no one here, and things are not looking good back home. Nevertheless, I need a lawyer to at least have the paper to defend myself against so much stupidity and senselessness. Problem is I can't pay a lawyer... If I could, I may not be behing in anything as a matter of fact...

Well, despair should bring no fruits, so I leave with these wishes:

May I get all I have been working hard for
May I finally achieve the dreams I've always dream of
May I keep happiness and peace and love, while everything else happens and afterwards
May I have the right tools to face the challenges ahead, and come out a winner

Courage, faith, belief... May these gifts come to us all this Xmas.

10-4

Muppets's BOHEMIAN RHAPSODY

2009-11-28T22:44:00.002-04:00

REÍR LLORANDO

2009-11-12T14:42:00.002-04:00

Viendo a Garrik —actor de la Inglaterra—
el pueblo al aplaudirle le decía:
«Eres el mas gracioso de la tierra
y el más feliz...»
Y el cómico reía.

Víctimas del spleen, los altos lores,
en sus noches más negras y pesadas,
iban a ver al rey de los actores
y cambiaban su spleen en carcajadas.

Una vez, ante un médico famoso,
llegóse un hombre de mirar sombrío:
«Sufro —le dijo—, un mal tan espantoso
como esta palidez del rostro mío.

»Nada me causa encanto ni atractivo;
no me importan mi nombre ni mi suerte
en un eterno spleen muriendo vivo,
y es mi única ilusión, la de la muerte».

—Viajad y os distraeréis.
— ¡Tanto he viajado!
—Las lecturas buscad.
—¡Tanto he leído!
—Que os ame una mujer.
—¡Si soy amado!
—¡Un título adquirid!
—¡Noble he nacido!
—¿Pobre seréis quizá?
—Tengo riquezas
—¿De lisonjas gustáis?
—¡Tantas escucho!
—¿Que tenéis de familia?
— Mis tristezas
—¿Vais a los cementerios?
— Mucho... mucho...
—¿De vuestra vida actual, tenéis testigos?
—Sí, mas no dejo que me impongan yugos;
yo les llamo a los muertos mis amigos;
y les llamo a los vivos mis verdugos.

—Me deja —agrega el médico— perplejo
vuestro mal y no debo acobardaros;
Tomad hoy por receta este consejo:
sólo viendo a Garrik, podréis curaros.
— ¿A Garrik?
—Sí, a Garrik... La más remisa
y austera sociedad le busca ansiosa;
todo aquél que lo ve, muere de risa:
tiene una gracia artística asombrosa.
— ¿Y a mí, me hará reír?
—¡Ah!, sí, os lo juro,
él sí y nadie más que él; mas... ¿qué os inquieta?
—Así —dijo el enfermo— no me curo;
¡Yo soy Garrik!... Cambiadme la receta.

¡Cuántos hay que, cansados de la vida,
enfermos de pesar, muertos de tedio,
hacen reír como el actor suicida,
sin encontrar para su mal remedio!

¡Ay! ¡Cuántas veces al reír se llora!
¡Nadie en lo alegre de la risa fíe,
porque en los seres que el dolor devora,
el alma gime cuando el rostro ríe!

Si se muere la fe, si huye la calma,
si sólo abrojos nuestra planta pisa,
lanza a la faz la tempestad del alma,
un relámpago triste: la sonrisa.

El carnaval del mundo engaña tanto,
que las vidas son breves mascaradas;
aquí aprendemos a reír con llanto
y también a llorar con carcajadas.

Juan de Dios Peza

HAPPY PEOPLE ON PIANO STAIRS

2009-11-09T01:01:00.001-04:00

Happy people on piano stairs @ Yahoo! Video

Wouldn't it be nice if things like this were done on a daily basis?
10-4

FILIPINO INMATES TRIBUTE to QUEEN

2009-11-07T03:30:00.003-04:00

When productive efforts actually pays off. They did it again. :)

And for those who have not seen their original "Thriller" dance that made them famous, here it is:

Many prisons around the world should copy this.

10-4

DAY OF THE DEAD

2009-11-02T23:25:00.002-04:00

THE KINGDOM OF WITCHES

2009-10-26T04:04:00.002-04:00

This is lovely!!!!

THE DUCK SONG

2009-10-26T04:01:00.002-04:00

Halloween en PR

2009-10-21T02:38:00.000-04:00

Oh Dear!

PARO 24 HORAS OCTUBRE 15 EN PR

2009-10-13T22:36:00.004-04:00

Here goes, just because I got the letter that takes me off my job too:

This is something... I was in a family leave, they were not even paying me anything, and still I got axed! More than 16,o00 were left without a job... The island needs change, but cutting out the people that are left in there and that need the money to survive is just too much. Then they wonder why so many outstanding people and professionals are leaving the island, looking for a brighter future.

Que nos pasa, PR?

~V~

The 1st Space Tourist!

2009-10-13T16:56:00.002-04:00

It's supposed to be this year that Xavier Gabriel will visit space as a tourist. His website is HERE. He wanted to be the first non-astronaut visitor to space, since as he says no one remembers the secon or third. :P He is from Spain. By now, he completed basic space training and is ready to go before the year is over.

CLOWDY with a chance of MEATBALLS

2009-10-12T23:09:00.003-04:00

Wanna see Mr.T and Bruce Campbell in a hilarious animation? Go see this, a family movie that rocks.

MEAN KITTY SONG

2009-10-09T04:38:00.001-04:00

PSYCHO KITTY

2009-10-09T04:32:00.002-04:00

SCARY BABIES

2009-10-09T04:31:00.001-04:00

TRICK-OR-TREAT KITTIES

2009-10-09T04:29:00.001-04:00

BATBABY

2009-10-09T04:25:00.001-04:00

HALLOWEEN COUNTDOWN

2009-10-09T01:20:00.000-04:00

SWINE FLU...

2009-10-02T18:27:00.001-04:00

Hmmm...

HOUSE STILL 4 SALE

2009-09-30T18:42:00.002-04:00

Well, for what it's worth, it is still 4 sale and I would not sell it if I could somehow pay for it... I'll always like the idea of what I wanted this house to become...

Migraine & ear pain ...

2009-09-28T23:32:00.002-04:00

Well, for the last week and a half I have been enduring migraine and ear pain thank you very much... It has been quite anoying, with a peak on Sat and Sun when I had to render myself unconscious and let medicines do their magic. Today the pain is there but is a bit more bearable... The doctor's appointment is for Friday (gee, now that's fast...) so hopefully by then it will get better enough for me to actually walk the walk to the doctor's haven.

Finished the Database2 class, with a high A of course. This one went fast and smoothly. I hope that the next two go the same way. Just a digital design class and a portfolio class... so I get the Web design degree. Yay! The year went really, REALLY fast. Gathering pictures to see if I can complete the scrapbook from 2007... Looking back is like these last two years went with a flash. I can't believe the fast-forward to now... Everything changed in every way imaginable! Hopefully for the best.

Moviewise, well... saw Jennifer's Body and Nostradamus 2012.

JENNIFER's BODY: Well. if you go with a teen mind, it is not so bad. It was short and sweet. People critique nailed it... but gee, no one nailed Transformers or GIJoe and now THAT was BAD scripting! I liked the idea of the movie, it was ok, taking into account the new vampire/werewolf/supernatural craze. Right there with pther corny movies, but watchable.

NOSTRADAMUS 2012: Nice documentary to make your fatalistic fetishes come to life. Yup, we are near the end of the Mayan calendar, and I suspect that on 2012 there will be the same craze as in the big Y2K thinguie... But watching it is a bit eerie, as we all know where we are heading with the pole meltdown, the broken ozone layer and the deforestation. We are in to many big catastrophies... that is VERY certain. This movie plus reading the FATIMA profecies, will leave you pretty mind-f&#*@d-up.

Yesterday night revisited GIJane as it was showing on TNT... I had not noted Vigo Mortenssen in there! Oh, my! LOL Something good out of that movie?

Family being funny. Seems there is a bad case of siblings rivalry or something. I feel like a referee where people go to complain... Este es el centro de quejas del negocio, puede quejarse en paz!. Come on, people... We are dealing with a situation that is a big thing and you are battling for the prune juice war? Gosh... Where are the priorities!

Really... they come to us telling us these daily mundane stories that are so irrelevant and ironic in their own way. We smile and answer and offer our advise... while dealing with our set of big problems that no one can help solve. You got it bad because you need to give shots of insulin? We need to give MissDD therapies twice a day or more that takes more than 4 hours when added up... if there are no complications. An insulin injection is peachy compared to this... That you don't have prune juice? Well... at least your grocery store is right there, at 5 minutes distance. Ours takes more than 1/2 hour to get there. If we can get there, as we are very homebound. It's all funny... when you see things from the inside of the looking glass, and get to appreciate how mundane life was back at home... so simple, uneventful, day by day that actually was blissful even with all the bothers. So... Family is really funny. Who needs drama? Ours is filled with that and a bit of comedy too.

Hubby tried doing sweet plantain on the weekend, and it came out quite good (amarillo en dulce). Today we gave the Pillsbury muffins a try, but 8 minutes in the microwave oven makes the pieces turn to stone... literally! You can hurt someone with those! LOL So, 4 minutes still leave them in a dangerous state. The perfect time for the muffins is 1 minute. Fill up with orange or grapes or honey and it is a nice dessert.

Today was a busy day, MissDD had an appointment with the physician, and my head was completelly in pain. Tomorrow will be another eventful day... Hope I get some restful sleep.

10-4

SHORTS, GAMER, and then some

2009-09-19T05:49:00.002-04:00

SHORTS: I really liked this movie. It is very entertaining and fun, love how all the "shorts" were tied together. Of course, it is from Robert Rodriguez... Need I say more?

GAMER: It was ok, eye candy... Another rendition of virtual meets real... The fun world was very much like the Sims gone wrong LOL At least it has been much better than the so called summer blockbusters...

HALLOWEEN2, Rod Zombie version: Ok, so my dear hubby made me watch this piece of s**t. 'nuff said.

I still think that the best movie so far is District 9. I really REALLY liked this movie... Maybe it was the coming out of just watching GIJOE or something...

Besides this... in TV the comedy of the moment is L.A.Ink. The big mistery as of why Aubrey keeps being there is what brings on the drama... pathetic drama but drama nevertheless. The Jon&Kate drama is beyond a joke, and it can only be followed online. The chapters lack charm and are going from bad to worst. The new season of ANTM is ok, but features the same drama stereotypes only that this time the girls really behave as if all were in high-school... The beautiful life comes just after ANTM, so it is a smart hook... and watching models at each other's throats is always fun. Vampire Diaries seem more interesting than Twilight so far... (who knows, maybe the second Twilight movie may change my opinion about it... TEAM JACOB!... Now, where did that came from? Lack of sleep, lack of sleep...).

Last week we watched the complete ROAR tv series (a lonesome Season 1). It was ok... the last chapter kinda was completely out of context, but all in all the series delivered. I really liked the concept of the villain being the 400 year old centurion-mummy looking for the Spear so he could die...

And the week before that we finished watching Carnivale Season2. Finally, I saw the end! But really... the end? Why, why, why? The series was written for 6 seasons... This was a big mistake... All the characters were left with completely loose ends begging for knots. Leaving the Omega resurrecting the evil Father and then Jonesy who may have been hit or not... Oh, that was truly EVIL.

~

What's New

2009-09-01T22:54:00.002-04:00

FAMILY: Well, family and friends gathered on Aug 16th to celebrate my baby girl turning 2 years old. Even if we were not physically in PR, at least we solved part of the dilemma via teleconference. That was fun, and the theme was Wonderpets of course! We really wished we could be back in the isle, to celebrate together so many holidays... Hopefully that will happen sooner than we know...

UNIVERSITY: Taking Web Design2. And only Digital Imaging and Portfolio to actually finish the Web Design diploma. It all ends on December. After that, on to a new project.

JOB: Still hunting. Internships not offering enough... nothing shows up... Hopefully a payed project will appear soon. Cannot complain too much, after all God has provided us with what we need.

LIFE: Sad about being isolated from everyone. Sad that people don't call up more often. Sometimes face-mail is even more important that e-mail, you know? But what can we do... By now we know that here in the US our friends will always be limited to the SMA chat as there is no way to meet anyone else in person... and the so-called family in the US is lost to us. Out of more than 50 nurses, only one has actually opened up. And of all therapists and other professionals, only one goes beyond her duty. Our situation needs support, we have iron will but we also bleed. Things are not as easy or as good or as stable as people may perceive. The only certainty is that we go on thanks to our deep love. As long as we are united, nothing will stop us. God leads the way. We follow.

10-4

Puerto Rico Horror Film Fest 2009

2009-08-06T02:15:00.001-04:00

Puerto Rico Horror Film Fest 2009
October 22, 2009 - October 26, 2009

El festival de cine fantástico, horror, bizarro y terrorífico Puerto Rico Horror Film Fest convoca a realizadores que quieran mostrar sus películas. La llamada apunta a corto, medio y largometrajes encuadrables dentro de los géneros fantástico, bizarro, ciencia ficción y terror.

El Puerto Rico Horror Film Fest ya es un referente para la producción hispanoamericana de ciencia ficción, terror y fantasía, además es una puerta de entrada para películas que muy difícilmente se pueden ver en Puerto Rico por lo especializado de su género. Esta muestra irá creciendo edición tras edición, en lo que respecta a programación, repercusión periodística y, fundamentalmente su público.

Esta muestra es un espacio fundamental para un tipo de cine que tradicionalmente es olvidado pero de gran aceptación en las audiencias.

El Puerto Rico Horror Film Fest, festeja su segundo año de sangre, terror, irreverencia, humor negro y lo más "indie" del cine de terror.

Buzzy Bee

2009-07-26T02:18:00.007-04:00

Yup, class began and I've been reading a lot, doing assignments... dealing with the green guy and trying to be positive that things will work out... dealing with some bitching in the current class... dealing with dissapointment as I expected a special outing today that couldnt be because of time constraints... dealing with prospect customer... dealing with a project that I will do because i feel like it (non-class related mind you)... And tired of movies that simply suck (Bruno anyone?).

And just because I'm bored:
Bitch Slap Anyone?

Cheshire... He's odd...

HarryPotter vs Voldemort... (for old rapper Steve)

Uplifting Conan advise...

About 300...

Yup... That bored...
10-4

Here and There

2009-07-20T14:36:00.002-04:00

Movies watched in the past days:
HARRY POTTER & the Half-Blood Prince: A bit dissapointing, I think this movie should not have been divided in two... It left it open to too much slow action. I almost fall asleep. I know, they are just focusing on the changes in the teens but come on... Love Snape, though. And hated seeing so little of Bellatrix.

KNOWING: Surprisingly one of the best movies of late... and still, it is just entertaining... not a wow... It has too much of scenes we have seen in many other movies. That ending reminded me of the big wave coming over the lady hugging her father in front of the lighthouse... after the asteroid crash... Same thing, different element (this time, a devastating sun beam).

ICE AGE 3: Amen. Smart & funny. A MUST see! Can you believe it, much better than anything else playing right now!

This summer has been awful for movies... Lack of "punch" and creativity. Well, what can you expect... If the masses acclaim awful mindless things as Transformers 2, of course there will be a long run with Twilight... Ugh! And no Bitch Slap on sight...

Classes began last week, so that explains my lack of writing everywhere. This is Flash2:Actionscript3.0. Although it doesn't seem too difficult, it is VERY time consuming and little things becomes a nightmare. Now starts week 2, and it means that this week we get to do everything we did in Flash1, in 7 days. Have mercy!

I keep sending out resumes... Up, up, and awayyyyy!!! Nothing so far. Frustrating. And thanks to no job, we couldnt even get to file the adoption papers for the training... So that project is also stuck. No job, everything is stuck... Everything.

Summer finally arrived, and the heat is awful. the cold is terrible, and then the heat is unbearable. You get everything related to heatstroke... EVERYTHING.

Hubby is trying to get the paperwork together to start classes in August, and baby has been misbehaving with the nurses (it is becoming quite obvious she wants just two people to take care of her: mommy and daddy... period).

Update over...

10-4

A WISH FADES AWAY

2009-07-08T22:54:00.002-04:00

We LOVE our homeland. Yes, many people are VERY anoying, but we LOVE our homeland. I LOVE my little island of wonders and enchantment. I want to go back, so we can have a choice in our everyday life when it comes to having fun, leisure... beaches, forests, caverns... You name it, we have it. At an easy reach. Friends and family are there, good and bad... but they are there. We are tired and jaded and we really need to see familiar faces, and maybe even get into a familiar routine but more into our own 'coqui' tunes...

This weekend we realized we can't go back. Not a realization... Well, it is something that was in the back of our heads, and we were trying to accomodate, and make true... But we knew better, we had hypothesis of how we could cope, how we could make things happen... We have many plans, A-B-C, all leading towards our surprising and triumphant return. We were proven wrong. Everything collapsed.

During the weekend i was contacted by another SMA family, it was peculiar that they were from PR, and they are still there. They have a boy that has a tracheostomy, and for whom they are literally "pasando el Niagara en bicicleta". At least they accomplished one important thing: They took the kid to Santo Domingo and did phase 1 of a stem cells treatment (they are 3 phases). That was no easy task, as each treatment's phase is $30,000, out of pocket, as no insurance covers it. And they began witnessing the fast improvements in their kid thanks to the risk they took. This is uplifting and brings much needed hope.

Now, to the bad part of the story...

PR and it's stupid political/economical/health system. They have the same insurance I did when I worked in the government agency... They must pay deductible of 20% that makes monthly expenses reach $3,5000(equipment, mandatory maintenance supplies, special food, etc). Think about it... In my not so perfect job I earned $2500... which paid all debts leaving just $50 in my bank account. Yes, I foresee our situation really well... Forcing the kid off the plan so la Reforma covers it cuts all services in half, as la Reforma is not accepted everywhere and doesn't cover EVERYTHING. Right now if we go back, Deedee would have to go with it as no insurance will allow her in the plan because of SMA being a fatal congenital illness...

Plus there are NO doctors seeing these kids. The only pulmonologist involved with them is trying not to see them so he pushes the Health department to do something... Gee, that solves everything... Health department don't care about 300 expendable kids on vents. Service providers literally don't have a heart, and if you don't pay they take everything away (thus the cases of dead kids...).

Living off the system won't help either as you would be forced to keep the kid under the very basics, reusing all stuff you are supposed to dispose of, making the food last by thinning it... you name it. And we are talking helping the kid survive... If Deedee has no tracheostomy when we go back, at the first emergency they will do one. PR don't want to handle NIV (non-invasive) even if proof of its benefits is there. And it is funny, because they dont handle well kids with tracheostomy (most end up in eternal hospital stays, getting medicines given by nurses and not seeing by the doctors that prescribes them...)... Until they die.

And SSI seems to be a distant alternative for us too. We have it here, I wonder if they would take it away because they don't want to give it in the island. Disturbing, as last year if you read Social Security notices, SSI is mandatory and of fast processing when fatal cases come into play, and SMA is listed on those exceptional cases. But you must belong to a state... And PR is a commonwealth... Funny, because I know some people get SSI. It is all selective aid.

So... until there is Medicaid, a respiratory center, doctors willing to have these kids in their offices, an ER willing to work with NIV and emphatic medical supply business... there is no going back. No salty weather... no blissful wind... no mango trees... no winter sun... Because Deedee must be there, must live and grow... Must have a true chance... And who knows, maybe even the stem cells will work a miracle if they are finally made accessible... They work with Cerebral Palsy. Hopefully they will work with SMA. And so we must stay until then...

Now what.

10-4

Transformers2, Pelham123, Audition, One Missed Call

2009-06-27T23:13:00.005-04:00

Transformers2... Eye candy, but a definitive dissapointment in dialogue/script/story. Gosh... Where are the good writers? Why I didn't became one, and save us all from so much crap? It's so sad... I can't tolerate the stupid way they make the Decepticons. Really... I could bear things if only just Megatron looked as himself... not as a spiked thinguie out of a Giger picture... Ugh!

The Taking of Pelham 123... It was ok. Not wow, too slow in some parts... but at least it was a bit interesting. A good weekend rental.

Audition... The beginning and the middle of it all... a long, LOOONG foreshadowing of the characters, thier specific circumstances, how they meet, how the relationship blooms... And then you see the sack moving behind the phone that rings, and the lovely smile in the girl's face. Well, it is a typical asian horror storyline... but gotta love the last 15 minutes of the movie. It makes the whole longeleer of time that you feel you are falling asleep make it worth the pain... The girl irradiates gullible lovely innocense while cutting the guy's feet... with such delicate demeanors... Granted, the rest of the movie sucked... but those last 15 minutes... Priceless.

One missed call... the american version... It was ok. A bit slow, but at least you keep some interest. Still, can't get over the fact that original is better, no matter how you put it. This movie goes fast, real fast! I found interesting the death in front of everybody leaving people not able to do anything to help, and then the hard candy (jawbreaker?) falling out from the mouth. Nice touch. But really, all the movies must have something related to a hospital in the beginning, middle or end? Come on!

Me: Reading some, creating some, figuring out the latest gifts. In the middle of the chaos and the request to free Toto in PR, life IS good.

10-4

And the latest movies that I liked...

2009-06-23T21:55:00.002-04:00

Liked? No... REALLY liked. Up and Taken.

Up: Bitter-sweet, very nicely done. The idea of completing a dream, the voyage of a character through conflicts and the big adventure of life... Priceless. Loved how they tackled the relationships, loyalty, loss, grief, friendship and what is the real meaning of life. Ellie did not went to South America, physically, but had her adventure with the man she loved. And was with him through everything, although invisible. In the end, she actually helps complete the task of not leaving her hubby alone... Loved this movie. A MUST SEE and a MUST BUY.

Taken: Just by that line in the trailer, you know it is a hunt, and the bad guys are going to get it. I loved the hunt. We watched this on Father's day, very appropriate for the day. Enough action, enough reality... Nice message. This is a good entertaining rental.

Still waiting for BitchSlap!

Exploring possibilities

2009-06-23T21:39:00.002-04:00

So what is new in my world? Hmm... Let's see...
Studies: Finished the DB class, perfect score thank-u-very-much. For the summer round I'll have two killer classes from July 13 to August 15. Those will be Advanced Flash and Advanced Web Design. So I foresee very busy days, staying up all night... The usual love-hate-love that I love-hate-love.

Exploring Studies: Been reading from different universities for Rehab Counseling, Special Ed Teaching... and the more I read the more i know I should just do the Media Design & Animation thinguie even if it seems long (3yrs)... simply because it is what I like from the bottom of my heart. Who knows... If the stars align themselves so I can do this... by getting a job...

Jobwise: Well, right now I am a Freelance Graphic/Web Designer for a company. Yup, got the offer and filled up paperwork, but until my first paycheck wont say it is official. It is more like an exploration experiment to see if I really like this... It has all I wanted: Work at Home, login, get the job, get it done, upload, get approved, get paid, next! No fuss, everything online. So I can supervise nurses job, MissD. and study. Let's watch what happens... At the same time the ex-boss who was sort of a boss is back, this time including my hubby in the offer. Let's see what happens in that one as well... I won't commit to anything until my classes from the Web Design diploma are over (September, just 3 more classes to go). After that, and after the experience as being freelance, we'll see what is best.

Exploring family: Well, opening up the home to alternatives of fostering or adopting, more biased towards adoption. It is a lifetime commitment that seems very right, as we have no family tailing us, and it would be a nice thing to have that touch in the house. Not looking for babies, not looking for younglings, focusing on teens and one special case that is 7 years old and drew our attention. But first, we have to pass the study/tests so we get certified for it. It is all a 90 days process. After that, then the state decides if we can do it. Let's watch what happens.

Days flying away, real fast... Many things to do, a few dreams to reach, and just the right amount of time to do it all.

Can't say we have no excitement.

10-4

Ash's new collar & latest events

2009-06-14T17:03:00.005-04:00

So, Ash now has a new pink collar so the whole world knows that she is a female. Good intentions, but not so appreciated by kitty, who kept fussing over the jingle bell and tossing and turning for almost an hour.

Yesterday saw Coraline & He's not that into you...

CORALINE: Of course I LOVED Coraline. That's a must get video. Interesting concept about the buttons. Loved the allegories on everything. And it may even motivate me to dye my hair blue... Who knows, let's see if I get that bored...

HE's NOT THAT INTO YOU... not so bad for a Jen Anniston movie (sorry, she'll always be Rachel no matter what she does...). This is more like a rebound of The Breakup... with a happy ending. Loved seeing Drew Barrymore, though. Big fan of her. But this is a once seen barely remembered movie... Too much of same clichés...

FRIDAY THE 13th... I tried. I honestly tried. But couldn't get ANY interest after the first 5 minutes. Sorry. I rather stick to the original.

Well, besides this, just a week and a half more to finish the DB class. Yay! Just 3 more to go... but I'll have a small "vacation" of 2 weeks. That's cool. I will try to get my license over here, and also to work on two websites: One for my landlord's church/community center, and one for Groundel who will soon loose his space in geocities as it is closing. Still job-hunting, and still information-hunting for the next studying project... So far being a Special Ed. teacher is winning over the Rehab Counseling... Let's see what else I find out...

Hubby is excited about something that may bring on the light at the end of the tunnel. Send good karma his way. :)

Thanks to Coriolis for the latest key to making school a happier place. :) Now, don't forget the bank thinguie!

And that's that for the last couple of days...

10-4

The weekly news, or something...

2009-06-09T23:23:00.003-04:00

Lets see...

Looking up information on two themes for studying:
Ms in Rehabilitation Counseling
Teaching certification for Special Education
So far, the RC is winning based on what I already know and what I should be able to do in the near future. But who knows... I may change my mind based on time and place and grants. For both there are grants. Let's wait and see. First, need to finish this diploma. Next, only time will tell.

Looking up information to be a foster parent. That would actually allow us to survive a bit longer, plus it would give us the opportunity to make a difference for someone else. Only time will tell.

Little Miss D. is in process for the three main stuff she needs: wheelchair, bed and stander. Only time will tell...

Hubby is trying to complete re-admission paperwork for the online INTER curriculum, to finish his degree. Only time will tell...

I've been in contact with some of my people from work and it has been uplifting. At least I know that I made a difference in some people's life. That's always good. It's also good to know that you are not forgotten, and that people actually acknowledge your efforts. It's a feel good thing. Hey, it's good to feel good. Not everything has to be depressing and sad and hard.

I would like to be able to go for at least a weekend over to the isle, too checkup on Auntie and see old faces. But that is a wish. Right now, no money no bologni.

Moviewise, these are my latests exploits:

The Unborn. Liked it. Same repetitive stuff from Asian films, you know she is pregnant (duh)... Reminded me of The Eye 2, many copied ideas.

Ghosts of Girlfriends Past. Well, knock me over, sedate me, make me watch it... in my sleep so i appreciate it... Bad attempt to do a romantic comedy that rocks... Good idea, bad execution? Watching the wedding version of Scrooged... literally... ain't funny.

Looking forward to Harry Potter, Transformers2, GIJOE... Still thinking that Bitch Slap is an April fool's day joke... Still pondering: Why a Saw VI? Then again, why a remake of Short Circuit?

And that's exactly how it happened...
10-4

WILD THING

2009-06-06T17:09:00.002-04:00

The Daily Picks

2009-06-01T00:06:00.003-04:00

Well... Lately we've been watching at least one movie per day to battle off some depressive awareness of life. The latest have been:

Terminator 4:Salvation. Wow. I expected a really bad sequel, but no... It was actually good. Predictable (a big trend for some time now), but I liked the machine giving out his heart to save the human... one of the most human thing to do: self-sacrifice. Enjoyed this one a-lot. From the summer blockbusters, I'll have to say this one is by far my favorite, followed by eye-candy Star Trek (who gets a second place in my list for being a re-make). The new John Connor is more believable than the gleaming hero stereotype he had before. I like this one better. Much more tangible. Skynet... I couldnt help but be transported to the T2 attraction at Universal. They really nailed the corporate Umbrella-like thing.

Wanted. Well, I must say that I thought it would be crap, and I disliked the Matrix-like scenes, but I liked the ending. It was obvious that the hunter was the father, so there... But the ending was ok for this type of movie.

Mirrors. Anoher remake of an Asian movie... But ok, granted, it was bearable. I really liked the concept and the execution was not catastrophic. It actually was entertaining... Predictable, but keeps your attention with the mirror effects. Loved the nun turned devil.

Besides these, been busy with class (duh). So far it's been an easy ride. I know the next two classes will be a pain in the whoohoo... Actionscript3 (Advanced Flash) and advanced PHP. More programming... I'll ask if I can take Illustrator, after all that is the part for which I wanted design on the first place...

Miss D has been doing great, so things have been routine and happy. Wonder Pets galore! And us doing some job hunting. I completed my potfolio site. Since geocities will be goine soon, I'm taking away all the bits I can and revamping the rest. Created a new Artiste & Techie site. Go check it out if you want to see my art and designs. Critiques are welcome.

So... Kitty has been a pain, hubby has been checking up college stuff, I am checking up jobs and college stuff too, and we are all keeping ourselves busy while keeping sanity and taking care of our Deeva. La-la-la.

PS: Friends are welcome. In the last past months we have noticesd that our friends are getting very lazy on us... No phone calls, no messages, no returning messages or calls... Come on, people... This is the only way we can actually feel we have a "social life". Being isolated within 4 walls is NOT easy. Trying to conquer the world behind a computer is fun, but is MORE fun if it's shared. This, in the NOW, is where we need you. We need your support, your being there, your insight as stupid as it can be. Yup, even listening to your daily crap is good, so we take a small break from our situation... We are in for a lifetime. We need to go on. And we need your support or presence or daily crappy babbling to at least have a good laugh a day. Is that so hard?

10-4

Movies... School... Diva... Movies...

2009-05-29T02:34:00.002-04:00

Wolverine... Didn't met any expectation whatsoever (thank heaven I had none for it). Entertaining adamantite... Loved Gambit. Still hate Scott. Xavier looked so fake...

Night at the Museum 2... Didn't met any expectation whatsoever (thank heaven I had none for it). Sucked. Will never be remembered anyway. Nothing like the first one.

Star Trek... Didn't met any expectation whatsoever (thank heaven I had none for it, because I actually liked it). This movie actually went way over my expectations (I had none). Kirk was Kirk in every gesture and sentence... I cant get over the thrill of Ceasar being McCoy... And Spock was perfect, Spock Prime even better. Uhura at least had brains... And the website is almost as good as Michelin's website. Very nice. Reminded me of the Andromeda Ascendant.

A Haunting in Connecticut... It was ok... entertaining. Next!

Watchmen... Eye candy. Expected much more... Too long, too few bangs... Didn't like it at all.

The Curious Case of Benjamin Button... The story that feels like a mix of Big Fish and Forest Gump... The story that the movie trailers said nothing about... Blew me away. It is always the movie that you underestimate the most... This one really got to me. Gotta have it. Up there with Moulin Rouge and Chicago (although it is not a musical... just a ticking)...

Between this, the Jon & Kate plus 8 fake drama, Wonderpets, House, and re-runs of America's Next top Model... And the weekly dosis of Legend of the Seeker... This is the survivor kit... Sort of...

Taking Database class... I don't get WHY I did not get this one convalidated... Hello!!!! I have a BSBA in IT!!!! But, ok... bearing with it... 3 more classes to get the sheep's skin. Just three more classes...

And maybe then I'll go for the BS Media Design & Animation... Shhhhhhh I said Maybe.

10-4

Remakes: Conan the Barbarian & Red Sonja & StarTrek

2009-05-17T04:38:00.007-04:00

Just found these...

Red Sonja (in pre-production) , will be played by RoseMcGowan... At least the cover/poster rocks! Red should be released by 2010...

Conan is in pre-production...

And BitchSlap is coming... Next week on the Cannes festival...

The geek in me had to come out, and pleads you to visit the Star Trek Movie site if you have not done so already... It has the wow factor.

Yup. This was the excitement of the morning.

MOVIES: RSVP? or more RIP?

2009-05-11T22:21:00.003-04:00

Yup, that should be for the next good movie coming up... if that ever happens. Three people have been complaining about the latest outrage: Wolverine. Well, yeah... Stan lee had joined George Lucas into betraying the true storylines for money. How strange. It is sad that the newest breed, or as I call them "younglings", become so excited above movies and characters that have been butchered. Wolverine's story was changed, not to the best of his interest... And once again the creative liberties with other characters have achieved atrocities. I love Gambit. I always will love Gambit. But not the Gambit of the movie. And is the same with Wolvie, I will always love Wolvie! The one that is in my comic-book vault... So many Weapon-X comics, so many spotlights... Classic X-men, graphic novels... Every story different yet all of them threaded so a bigger plot would prevail. All got screwed when Cable and so many others appeared.

It is the death of the icing of the cake, as now they just give generic SaraLee cakes... And younglings seem to love those generic cakes... If only they knew that the best cakes were done by old ladies in their homes!

Take Twilight... I still don't understand the big deal about it. The old 90210 had more drama and deep storylines than the stupid storyline that it presents... The movie lacks EVERYTHING, and yet all these younglings throw themselves at the cast and look forward to more Twilight... Nothing like Interview with the Vampire. Even Queen of the Damned (the movie) is better than Twilight (and for me to say that... because QotD really, really sucked... the bad way).

Originality at the movies seems extinct... This is now remake land... Or "bring back the 80s" not understanding that you may mimic anything but it will never be the same. What about creating a different era? Big problem when there is such a big lack of true talent. The only good young actors of note right now is Johny Depp... Now, there's someone who do original work. Besides him... I really can't think of anyone else. The good old ones are getting too old and dying. It is scary, when you think about it...

I look forward to Transformers just to see what else they can do with it. They already screwed the original characters... GIJOE is eye candy in red white and blue, an ode to fighting terrorism... and I only want to see it because of the Baroness. Terminator... I am curious to see what else can they milk from that storyline and how can they succeed without Cali's governor. Remake-land will butcher poor Jason on the next Friday the 13th... And will grant Star Trek's captain Kirk a second chance (maybe this time the actor will actually... act...). It's going to be quite a year... Of more blah... I don't expect anything amazing or original from any of these films. Now is the moment of eye-candy and effects with no stories... That is the food of the new generation.

In the middle of so much blah it is good to find something like Legend of the Seeker. One may think it is like Herc or Xena, but no... The stories are well written and they are not just about the main characters. And they have lots of creativity on them. I'm definitively moved towards reading the books that the series are based upon. Yup, a TV series gives many kicks and blasts to all hype movies currently showing on the theater... talk about saving bucks!

10-4

POTTER PUPPET PALS

2009-05-09T04:55:00.001-04:00

SIMPLE GENIUS

2009-05-09T04:17:00.001-04:00

SOMETHING UPLIFTING

2009-05-09T04:05:00.001-04:00

SLEEP KEEPS ON BEING OVERRATED

2009-04-24T00:45:00.001-04:00

For some days now it's like I go to sleep at 5am and wake up around 10am... If it's not one thing it's the other... Monday baby had an appointment, Tue & Wed had class mean assignments, today baby had another appointment... Weekend and afternoons have been nurse-less, and Wed&Thu hubby sent day nurse home as she seemed sick... as in ill, people. So... The sleepless drama keeps on. Happy happy joy joy...

Class is ok... could be better if it actually felt there is further interest from the teacher to teach... (what a concept!) The comments made to my classmates and myself are very simple and do not add much to the learning process... Come on, there's only so much you can actually discuss in a forum! What happens when everyone is stuck? And... joys of joys... next course is about db... I need to find out with the counselor if I really have to keep this track courses, as there is another track focused on design and I dont know if in the end we have to take 2 tracks or a choice between them... I didn't get to choose, so... So far, yes, I'm pretty miserable. I hate programming. I'll whine about it through it, and after its over. I HATE PROGRAMMING. I'll get over it, but... I HATE PROGRAMMING. 'nuff said.

I hope this will be all over in August. I want the diploma to actually go in-depth into job search, working at home version... or a hybrid of 2 days in the workplace and the rest at home. I know the right job fit is for me out there. But I need a focus that with classes and baby I simply can't have.

Seacacus was a fiasco. they have same issues as here: Housing list is closed and overcrowded, so we can't get in the waiting list, so our contact can't help us getting priority, so it's all stuck.

The wheelchair and medical bed drama continues... I hope it all can get a happy resolution tomorrow... erm... today?

I FINALLY filed up my Income Tax 2008. Yes, I'm VERY late, especially for someone who doesn't have to pay... I completely forgot about it, the pressure to fill it up in here is not a constant bombardment as in Puerto Rico. But, finally filled it up and will send Saturday. Cannot say Friday as I have a nasty class assignment for Friday...

So this is it for now.

10-4

What's going on so far

2009-04-18T19:14:00.001-04:00

It's Star Wars weekend, and so we are chained to re-runs of the first 3 movies and then the three real movies of the 6-part saga. It's both good and bad. Hate the newest version... What were they thinking? Such a character like Darth Vader with such a lame background... ugh!

Well, back to me.

Home: For now things are on track. Some expenses will still be covered by gov aids (amen) and so we can keep focus on caring for baby. Besides that, looking for housing options to see if we can actually qualify somewhere else for Section 8.

Class: Second week of sucky PHP course, almost over! I don't see any learning experience here... all I see is loud mouth people and no comments from the teacher... Don't know what else to expect. Will try to keep on reading and keep on trying to learn by myself. Did I mention I hate programming? Just checking.

Well... building up a class site for my dream of doing a SMA chapter in Puerto Rico. You may go there and browse and critique if you feel like it (it is a work in progress, made the basics in CSS and must apply some php to the forms... This is the 2nd week, so don't expect fireworks... It was a "design a site"week... Next week real programming begins. Wish me good luck).Anyway, hope that this truly ends in August. After getting the diploma I may go forth and do a bachelors in multimedia or graphic design. But that is another story... One thing is certain, so far this was a really good idea. Besides keeping me "sharp" it has also validated my desire for a career change. I REALLY like webdesign. And if I am able to do something about Motion Animation I will be in heaven. I REALLY like motion animation... Hopefully the stars will align and I will be able to get into that trail, follow it, and succeed. I have wasted so many years doing network work... But maybe now the new era has begun.

Friends: Groundel has been busy straightening up parts of his life (yay), Coriolis has been busy with animals and plants and then some computers... (yay?), and Carlos managed calling up and saying hello (yay!). To the surprise of everyone I keep up with everything about beloved little Paradise City, and even got to find this lovely link to savor Puerto Rico in all its splendor! Visit Eye Tour Puerto Rico and you'll see what I'm talking about. They even have a video of my favorite place, Los Morrillos Lighthouse!

Life: Getting summer clothing for little miss D., trying to keep up with the class, caring for miss D., and job hunting, house hunting, services hunting. There's never a dull moment.

10-4

Weird Groundel Post below

2009-04-13T00:17:00.001-04:00

Since videos did not show in his site, I posted them here just so they are there. Enjoy or something. :P

HAPPY BIRTHDAY TO MEEE!!!

2009-04-10T21:01:00.002-04:00

Yup, on April 8th I turned a year older... and somewhat wiser... The day was not so bad at all. Got phone calls from the right people, and hubby hit jackpot with a lovely victorian-goth dress that really surprised me. And the cherry on top of the sunday: Deedee has been doing great so far, so the three of us were at home. It's as good as it can get. :)

This week my new course began... Introduction to Programming. Not so thrilled about it, as I'm trying to actually run away from programming, but I know it is a necessary evil. This course teaches PHP, which seems to be in vogue. We'll see what happens... I should do good, it is not my first programming course and I dealt with some Oracle and ASP.net... It's just annoying.

And that's what sums all up, for now. I'm feeling very tired and sleepy... Ge, I wonder why...
10-4

CLASSES OVER, AMEN!

2009-03-29T21:16:00.002-04:00

This was torture! But finally made it... Created Deirdre's Official website. Visit it and spread the word!

Busy, busy

2009-03-27T02:23:00.000-04:00

One site down, one to go... Just 2 more days for this to be over... Gosh, no more double classes, no more!

TIRED

2009-03-19T06:26:00.000-04:00

Stressed, tired, overworked, tired, many things to do, tired... Tired, tired, tired...
Back at home, after a whole month... Tired... And Deeva beeping all the time... No rest for the wicked.

SURVIVING WITH FLYING COLORS!

2009-02-28T03:05:00.002-04:00

(exhausted? well... duh!)

Classes: Made it to my second week, keeping all my grades at a 100. Yes, people, I am very picky with my grades, especially in the starting weeks (those points will be needed when you are reaching the end). So far, LOVE the Flash course. The manual is refresing the little things I never understood well (hey, I took a Flash4 5-day training back in 2002, bear with me!). Who knows, maybe Foamy will have a competitor soon... LOL For the Dreamweaver course, the dice were rolled, and I will try to build Deedee's website in 4 weeks. If that turns out (I know it will, I have been postponing that project for long), I will get a domain so she has her own adress, to make things even better.

Deeva: Infection out, antibiotics ended today, and plans to come back home stand for tomorrow (today) at 2pm. YAY!!!!! Daddy is in the hospital in double duty, as he has been very supportive of me getting the assignments done. Yeah, we all know the classes are fun but they cost and I better take full advantage of them. Deedee will have her share of fame when I am done with both. After all, this is all for her. Anyway, fingers crossed that we all will finally be together soon. Being in the hospital for so long really sucks!

Everything else has been on hold. Family, friends, postings... I've been in working-production mode and I am really tired and need lots of catching Zs. We'll see how that turns out... Got assignments for everyday, and I dont foresee we will have nurses for the weekend. Well, at least Daddy takes care of business really well. He's been rising SMA awareness at the hospital among the nursing students telling them about it, what to do, and what a client expects. Fun stuff. They also liked our manual, they say we should publish it. Who knows... Maybe when we are extremely desperate?

Running out of fuel...

10-4

BETWEEN HOSPITAL & CLASSES

2009-02-21T20:42:00.002-04:00

... ermmm... Can I sleep?

So... February has been an interesting mess so far. Never a moment to catch your breath! No way! Action!

Deeva: Got pneumonia and gave us quite a scare early in the week. We had to take her to the hospital on Tuesday, and so far she has been responding to the antibiotics. From dark green brownish icky mucus to crystal clear alien acid, baby improved a lot in just 4 days. Hopefully we'll be home by next Friday. Fingers crossed.

Classes: Well, since I couldnt take Flash in January, now i have to take Flash and Dreamweaver. Got the two hit combo, smashing 5 weeks that will definitively take a lot from me. But since I have so much masochism in me, I know that I will enjoy the high stress. Just for today I need to complete a storyboard, blueprint, two questions... all for one class... and a tutorial and questions for another class. And need to start a gif for tomorrow when I'm done with that, and a storyboard for the other class... All smashed into a nice long night that is just ahead of me. Gotta do that, so I can go take care of my hospital shift tomorrow in the afternoon. Wish me luck.

I was actually gona leave the classes, thinking I couldnt handle that and the hospitalization of baby... Slept on that decision and woke up with the right energy to say "Fuck it, I'm doing it". Reality is that baby will be in the hospital many times, and we need to accept that as our daily bread. We have to adjust things, being positive about it, believing she will respond and be better. There is no space for thinking negative, as those what if's do not improve any situation and actually simply drown us in sadness and depression. We cannot let ourselves drown. We have many things to do, many plans ahead of us, and we must believe that things happen because in a way they fascilitate other roads and makes us stronger.

We travel daily through the road less taken, discovering many paths that have not been walked before. Definitively not the easy road... But you know what? It is the most fullfilling.

So... Just taking a break between assignments to let the world know that yes, I'm alive... I'm still kicking... I've not given up... And the best is yet to come.

Now... Remember Legend of the Seeker...9pm, PIX (Ch11). Hey, it's the only interesting thing on TV right now, gotta milk it!

And kids: I'm not a caller. You wanna talk to me, you gotta call or drop an email. Moodiness keeping the people skills away, focusing on production line mode... Nothing personal. Ok?

10-4

Plans...

2009-02-16T13:10:00.002-04:00

of action, of inaction, of thought, of not...

Finally found a dentist on Saturday (AMEN!). Had a cavity digged under a silver plate, so that's what the problem was. It was a funny visit,well... seems the whole day was about "amateurs". The doctor is an "amatuer"painting artist, and has a fruit bowl painted in a canvas, in the client service room. I asked why the painting had no signature. Then he asked what I thought of it... I just thought it was something done by a daughter, so I said it's good for a beginner. Oh, dear... He smiled and said he had done it, but he didnt like the outcome so he didn't signed it. Umm... I kept thinking of that and it just tickles me. Gosh, at least I didnt say it was crap! He went on to say he used to have a mountains painting that became the topic of conversation with a client... who later on he married, and that it's been 10 years since then. That was a nice Valentine's story. Still, on my way back to the apartment, I kept giggling at my response of "Not bag for an amateur". Artists...

I arrived home, and after a while the girl who took Deedee's pics arrived. I was telling the tale of the dentist and the painting, and we were all merry (mostly my dear hubby and her were merry and baffled because I had a laughing spell). Funny thing is that the girl ended up joking that the pictures were "not bad for an amateur". God, it kinda make me burst even further in laughter... Sometimes truth is weirder and funnier than fiction. Especially when it comes out innocently, and somehow without notice. Oh, the laughing episode grew worst after she went away because... well... in Deedee's case... It is kinda true... I have taken baffling pictures of her spellbinding eyes (which somehow didn't came out in the pictures the girl took... Baby didn't smile and didn't cooperate with her at all).

That's the merry part of it all. The down part: I REALLY felt that drill in my tooth. It was awful. It's been 3 days and I still have the sore side. And I have another appointment for the tooth with temporary filling... Ugh!

A family gave the idea of considering moving to another state. We can't go down as services are absent there... We thought about Madison, isconsin. It had been our first choice when we were to transfer but we had to surrender to NJ due to lack of Medicaid. Perhaps now it would be more feasible... I know that's a very cold place, but quality of life and employment is more than 50% better than Newark. So we will try to see the options over there, and it it all points that way then we will go ahead and do it. We are also finding out of how things are in Secaucus and Jersey City as it seems there are more job offers over there that could mean opportunity for me in particular... So, still in hunting mode.

Courses begin in Thursday, this time will be 2: Dreamweaver and Flash, together. Hopefully won't be a hassle, after all I know the old ways with both. Crossing fingers on not going nuts with so many assignments!

And that is how things are in the land of Far Far Away.

10-4

HAPPY VALENTINE's DAY!!!

2009-02-14T02:23:00.003-04:00

Friendship day, lovers day... o algo...

Me, I have a terrible tooth pain that is driving me insane. Since things are not so easy in this lovely place, I got a date for March 20th... WTF? What am I suppossed to do in the meanwhile? Well... Gotta get some diabetic pills before I actually go to emergency and try solving the issue... I can't wait so long.

Just saw some kitty videos. THANK YOU GROUNDEL!!! I see my babies are big and gorgeous! Prrrrrr!!!

Happy happy joy joy!

Dissapointed...

2009-02-10T01:58:00.002-04:00

One more time? Yup... Actually several times...

As usual, maybe our expectations go beyond the capabilities of the popele around us, or around our little one. Today it was a vendor-show-fitting to select a stupid wheelchair. We took the time to do the proper research, as usual, and had our preferred choice based on Deeva's necessities... The vendor's first attitude was frowning followed by a comment of how we went straight for the best. What? Our baby doesn't deserve the best? What's up with this guy? We'll see about the outcome. The chair is not what we expect, and only do tilting/reclining. The padding should allow her to be straight at least fro an hour. Besides the chair we had the stander info, but that won't be touched until we have an actual hip x-ray that tells them Deeva can use it. Contrary to the doc who just said "have them call me". Whatever...

What bothers? Attitude, attitude, attitude. The people explaining things as if we didn't understand, as if we didn't know implications, and worst: not taking into account Deeva's needs and growth for the next 8 months. Insistence on ordering without taking into account the next 8 months can lead to trouble, as the chair will actually arrive within 7 months... (Next Christmas?)... We will see how useful can that be for her by then... Another thing is the stander thing that is not taken too seriously and other SMA kids have as important part of their thrapy. That and aqwua therapy. They have started as early as 9-10 months. Deeva is 1.5 yrs old, and I dont see why the insistence on putting boundaries that we know she don't have. We have a staff filled with "low impact" people that is NOT cutting edge, dont really think outside the box, and honestly are not doing their job properly or as I expect. And of all people, I can expect because I witness services where i used to work, Vocational Rehabilitation Admin... So I know what is out there, what can be done. And it is the main factor that is so frustrating. If I were an imbecile or ignorant I would be dazzled by everything because everything would seem so magical and right. But I'm not, because of my witnessing things, because of my research on what to do to make Deeva reach her full potential... because we are not average, I am not average... Ugh! And getting comments that leads you to get the point of "why bother? they dont have the money, and is not like the kid can do much" is beyond enraging.

That's about the wheelchair fitting... Now about the nursing company. We are wondering which other company is out there can actully do the job... If that is actually a human target. I mean, we have a stupid manual of care for our baby, we explain everything in a heartbeat, her care is more about being consistent, follow a routine and be aware. No hocus-pocus, no hidden surprises... Well, now we have a star nurse that wont knock and wont call when she arrives because I guess she fears she would break the force field around our house or that it will desintegrate her. Its a big WTF. She comes, ists closed (duh) so she goes. WTF!!! Last week she was annoyed because we sent her home as she was coughing all morning and she seemed sick (gee, excuse us for looking towards Deeva's health). Besides her, no other nurse for no other shift appeared, even if they were scheduled for Friday, Sat and Sun... So, what's up with service? What's up with everything? We asked for our old reliable nurse, and they just did what they wanted (putting her into a case for the night shift) as the opportunity for that came when Deeva fell in the hospital... So they took our nurse to put her in another case... Lovely... I guess they pay more. Its the only reasonable explanation I can think of. They tell us she doesnt want our case anymore. Funny, because I talked to her last week and she sounded quite the opposite when I asked her why she had not come back, that we missed her. The company sucks. That's all i can say about it. They lie to their teeth. And we are getting to the fed-up part. So the drama of the nurses from hell continues... We asked for something, they seemed to hear, and today in the night we have a "meet and greet"with a nurse that, ok at least she showed up, but she is the same as the others that didnt work out... And we wonder, is this it? Its horrible. Its unnerving. Its stressing.

Wheelchair done, nurses done... Getting to the services in matters of therapy. Everything sucks about it. We get the "we will show so you do"and what we think it should be is consistent 3 times a week of coming and doing the actual therapy. We do our part, but somehow we are not impress with the services as it were things we have been done ever since we got all the info and the what to do back a year ago. The only one that contributes something is the communications specialist and we suspect it is because since she works in cerebral parlsey she is exposed to more things related to Deeva's condition... Everyone else is a supporting cast that is good only for keeping us a bit sane with social face to face interaction, that is all. But who knows... Maybe I'm wrong. Maybe they DO something, it is just that I'm so used to things (one of my friends is a top physical rehab therapist and she couched me since this started..., maybe that's why I dont see the razzle-dazzle about them.

Maybe it's me, maybe it's us... I keep thinking it must be us, it cannot be that everything is so lame. It cannot be that we actually do a better job at everything we do. We dont have a certificate for the skills as PT, RT, OT, speech, communications, or as doctors... But we DO have beyond the skill and knowledge of these so called professionals, and somehow instead of boosting our confidence it actually depresses us. Yipeee, we know and can do everything... So... How can others help if they suck at everything they are suppossed to be specialized into?

Tonight, after the morning arguing with the nurse agency, after the afternoon at the stupid fitting, after the dumb meet and greet, after having to take a long nap as I was completely out and drained... I woke up, it's 1am, and I just wrote all this... How I feel? Honestly I feel defeated. I feel depressed. I feel sad. I feel we are wasting out time, our lives. Deeva dont have the quality of service we expect, and seems that no matter what we do if we dont do things ourselves it all just sucks. We dont really have a professional supporting staff that is actually interested in going the extra mile and actually tailoring things for Deeva's skill improvement. There are no friends or family to rely on, at least to give us a bit of energy or just to listen to us. No friendly faces at any given moment of the day. It's just us: mommy, daddy, baby. Oh, and kitty. And it is alright, we accept our fate... But when you see goals and purpose bent towards the will of a flaw system and stupid people serving in the system, you start to wonder what is best.

How can we move on to a level where we can actually make our own decisions if we dont get a job? And gosh, NO ONE would hire us! We have tried EVERYTHING! And then when we think we can balance outside job with Deeva's caring, something happens that requires both of us juggling life. And the more days that passes the more certain it is that raising Deeva requires both of us simply because services are there but are just a mirage, a mental placebo. Sure, a helper may appear, but we actually do all the job so it is done RIGHT.

Somehow the opportunities are faded, the outlook on where to go from here is tied up to getting a job, moving where the job is, getting a new supporting cast for services. Problem: It goes in that order, days keep passing and it all seems a neverending story. Staying here in NJ was imposed on us, and we hate it. We want to go back home and we cant. And the ease of people being two face all around us is really heart-breaking... whoever is nice to you has an alterior motive.

Dissapointed... There are no other words to put how we are, how we feel, how things are turning out. In our microcosmos, we stand and we prevail... The trouble is the rest of the world.

HAPPY 2nd ANNIVERSARY to US!!!!

2009-02-03T01:04:00.002-04:00

Just a reminder to the world: Two years ago the Witch and the Mage said "I DO"... And for so many non-believers, well, here we are. The amazing journey has taken many unexpected turns, but still has been the best thing in both our lives.
I LOVE YOU, ZORDAK! "til the end of time.
XOXOXO

LEGEND OF THE SEEKER

2009-02-03T00:58:00.002-04:00

magic-fights-more magic
Ok, Last week I was obssessed with Michael Hurst, finding all the info I could about his wherabouts... Well, he directed episode 10 of this series. Looked it up, HULU-ed it... Well... If you thirst for something reminiscing of Xena and Herc, look no further. Filmed in NewZealand and featuring a cast that you will recognized for those old series, you will enjoy this new series. Finally, a breath of old-fresh air! Music by LoDuca, of course, and executive producers RobTapert and SamReimi. A nice break from so much TV trash! (You know, the only watchable thing right now is House... so this gives another selection to the daily menu). So... Go check out Legend of the Seeker. It's worth it.

VISUALS 101

2009-01-25T20:57:00.002-04:00

Well, not that I have changed alot. Still the same old twisted happy goth. Loved my layout, but since I was forced to update decided to change from all red/black to a bit of purrrrrrrrrrple in the mix.

Anyway... Found many unexpected things today, 70s and 80s of course. At least today I was not doing anything sewious. Just strangling time.

Don't Ask...

2009-01-25T15:26:00.002-04:00

LOL

Glamour & Glitter, Fashion and Fame!

2009-01-25T13:58:00.002-04:00

And then some...

Gotta get me the complete series... Hmph!

Just for some kicks...

So many losses...

2009-01-13T16:10:00.003-04:00

what a way to start the new year...

I just read that an SMA baby, Cornelious, died on Saturday... He was 10 months and 10 days. Many SMA kids have been VERY sick, and when we got to PICU we found Israel, who has been there for 3 weeks and counting. The weather takes no one for granted.

Last week a friend who was to turn 21 on Jan 13 died, after she was healing and doing well from her transplant the doctor arranged a liver check up, which ended up in malpractice as an artery was broken and no one noticed until everything inside her got paralized. Imagine that...

We are sad. Nothing you do can change the fact that the only ones who take good care of SMA kids are their parents. Everyone else makes stupid mistakes out of carelessness and stupidity. It is so unnerving, as whenever you meet people or doctors, they say "oh, but you have nursing care, right?". Like that settles the issue of bein stress free, free to work, free to do whatever... How? The high anxiety and stress of what a stranger can or cant do is beyond belief. If I count all emergencies that have happened... all have been due to a small stupidity moment of someone else... not us, not our baby... To top things, you go to a hospital and there you find the same... nurses and RTs that shouldn't be there because they barely do their jobs and are lazy... and still getting paid. What is the difference from here and our island? The doctors having a broader knowledge, and more availability of services. Everything else is the same crap: malpractice due to stupidity, malpractice due to laziness, malpractice due to overwork (most work 2 shifts, not that it includes quality of service!).

Its all tiresome, and very very draining. We have no one to turn to, and we know that situation would be the same for us anywhere in the planet... due to our limited family and our limited friends. Groundel,LS and Coriolis are always there, and have been of BIG support, but beyond them... Well, beyond them is all the perfect beautiful familiar strangers on the SMA Support group that have been "virtually" there all the way... and they know how things are and why we have this ongoing desire to live each second to the fullest. Without them, I dont think we would be here at all... I dont think Deedee would be here, period.

Besides this, both Mark & me had to cancel our classes, as they started yesterday and obviously we wont be able to attend until Deedee is back home... which may take up to 2 more weeks if things go well. A small drawback, but our main reason for being here is Deedee, so she is the priority. Mark is more obligued, as he must get a RN (registered nurse) degree for Deedee's own well being. Me, the diploma I'm completing is for keeping sanity and having a real world stress, I need it so I wont go insane being between 4 walls all of the time, and it is not so critical. I'll take classes next month, no problem.

Mark may have a prospect job, but as every other offer it is far... We will see if it is worth it or not. But that has to wait until Deedee is home as well, and they may fill the spot by then... Whatever happens, hope things will fall in place little by little.

Me... I'm fed up with some people, both friends and foes. I'm making sure they get their own "mandá pal carajo" at the right time. I'm tired of bearing the sign of "Pendeja a bordo" or something... That's how it feels. Being good and nice doesnt mean being "pendeja". High stress, high anxiety, high everything... Including high belief in things working out and getting better.

Sing along:
"You take the good, you take the bad,
you mix them both and then you have
the Facts of Life, the Facts of Life..."

10-4

Keeping records...

2008-12-14T20:24:00.004-04:00

This is the highlight of past week.

Posted in SMA forum, here for "record"purposes. Wouldnt post in baby's blog as this is not too happy. I've been wanting to make heads roll!
Posted on Tuesday night:
"I am beyond upset. Today it turns out that I was branded as a "mom in
denial" because apparently Albuterol is the Holy Grail and the non-
invasive way of dealing with SMA is wrong... the way we do it. Here is
the story:
Pulmonologist gave order for Xopenex & Robinul four weeks ago. Yipee.
Upon giving nebulizers with Xopenex for 3 minutes to Deedee, she
desats to the 50's. This happenned twice, in front of our old nurse,
so she saw that we were not making things up. We discarted the
nebulizer, did treatments each 4 hours for 5 days and Deedee did well
and got her bug off. Fine. This I had already posted here...

So, she gets her vaccines and flu shots, and ended up three days later
with fever and vomiting. So we went to ER, stayed overnight at PICU,
they found nothing of deep interest, BUT the RT, when she went to give
the night treatment, she was going to use Xopenex and we told her what
happenned. She said that then she would use Albuterol, to see if
Deedee did well with it. Three minutes later she had to turn it off as
Deedee's heart rate skyrockted, eyes sollen and she became cold and
pale. She said she would let the doctor make a note as it really seems
that Deedee has a bad reaction to Albuterol.

The week that followed we noticed that Deedee has been with distended
stomach, much constipation, too much gas... from almost no vents now
she needed constant venting and residuals checks... A new nurse
pointed out Rubinol gave gas, so I looked up the side effects and
seems they can be more than just that. Distended stomach,
constipation, dizziness, blurry vision... well, obviously the oh-so-
great benefits of the famed ani-drool somehow lost their luster. We
tested stopping it for a week. And so the problems with being bloaded
and distended like a balloon and with constipation were gone. Heart
rates became normal and baby seems happier. So... What did we learned?
No robinul is best. For us, drool is the same anyway. What's the point
of giving meds that actually works against your child?

So... Today had a cardiologist appointment (a waste of time as in
reality he didnt even did a EKG or check anything about Deedee...
didnt even knew what SMA is... Didnt even touch Deedee! I tell you,
not even 5 minutes after a 50 minutes wait) and also with the
pulmonologist to give Deedee a Synagis shot. I asked for a D/C for the
nurses orders on albuterol/xopenex and robinul, explained why... The
pulmonologist says she spoke with the doctor from Picu and he said
Deedee did fine, since the RT said nothing and put nothing in the
notes and she could not brand Deedee as allergic if she had not seen
any reaction at all. Then the new nurse buts in asking these questions
about oxigen use, about the way we attack desats, that Deedee is in
the 50's (She desated on Friday night because of a plug, a fast going
down and then fast going up to her normal 98, but she emphasized
Deedee stayed in the 50s which was not true). She was also complaining
I wanted to suction while it was her duty to use the ambu, and then
going on with her experience with SMA kids (tpes 2 and 3 and
trached,by the way), and that she felt uncomfortable with how we were
handling her. She went on with explaining we didnt want to use Xonopex/
Robinul, the doctor explained 5 times what a bronchodilator is since I
am stupid and I dont get what it does and the nurse emphasized I didnt
know what I was doing...

In the end I got a PRN for the Xopenex, less dosage, the pulmonologist
pissed at my attitude but giving me a referral to an allergist for
finding out about any allergies Deedee may have (which I had asked in
the first visit since I know I am very allergic to many things and
Deedee is very much like me)... We get home, the nurse keeps her talk
about how SMA kids should be handled, about the right way of handling
desats... you know, she is such and expert... When the shift changed
and the old nurse arrived, new nurse began pushing buttons the same
way she did with the pulmonologist. She started her drilling on the
what ifs, what would we do it Deedee needs a bronchodilator, what
woudl we do... if anything. To make a long story short, I finally
screamed at her and after whining to my husband about this kid "not
gonna become the first one she looses", followed on me being in
"denial" when in the end for the child safety she should be trached...
and then she goes. I made her feel so uncomfortable after all, doing
all these things and procedures that we came up with! Um-hum... The
old nurse told us that in the morning, the new one had called the
agency saying she would not be back in the case (seems that at the
moment we were in the pulmonologist office). So... End of story about
the new nurse that only lasted for 1 week... Still, it does nothing to
make me feel better...

My main upsetting/ pissing off factor is simple: Why is it no one
believes it when you say your child reacts to something? Even with
witnesses! Why it is wrong to follow Non-Invasive when Deedee's lungs
are clear, her stats are 97-100, heart rate is normal ( and we keep a
hourly log for both just in case, to show the doctors). If she doesnt
NEED a medication why should she have it. Even more, if she REACTS to
a medication, why should she have it even as a PRN?!!!!! I have a
manual that seems is made of thin air as nurses dont believe in it. I
have copies of the consensus, of all of Swoboda pages, of any
information RELEVANT to SMA Type 1, and repeat to them Type 2-3-4 is
NOT Type 1! Just because Deedee seems fine doesnt mean she is not
frail. Then we get the stories of rehab and therapy and how it all
worked... Do they get that Deedee's genetic disorder actually
progresses with time and that we must work to actually keep what she
has? It is all a constant fight, a constant questioning of everything
we do... Which is everything you all do... And it is all so
exhausting, unnerving, tiresome, frustrating and angering!!!! Even
more when so-called proffessionals do the oppossite of helping!

We will try getting a hold on DrBach and Lou tomorrow during the day,
to see if they can shed some light upon us if we are so wrong, or upon
them if they dont want to hear us because we dont have medical
degrees. I want to reach DrSchroth to get her opinion and actually get
an appointment (working on that), as I see that with this
pulmonologist we aint really heading anywhere as she follows "standard
rules" for these patients... You know, what I brand as "mass
syndrome". Why things have to be so difficult? Aint them
difficult enough?"

At least the night proved that I'm not alone in this psycho-world, and that exactly is something that SMA parents go through with professionals over and over and over...

The outcome:

Wednesday: We tried to get DrBach in the morning, good timing. He asked why give meds when baby's lungs are fine. Amen. He gave a discontinue to them. In the afternoon nursing company called, as PsychoNurse had stirred the beehive over there, but their tone settled when we simple said "talk to DrBach, his order is discontinue the meds and no O2 unless she's having a respiratory arrest". End of story. Suddenly we are back to being the parents who "care so much and know so much". Um-hm... That's as long as there is a medical order backing us up. Well, apparently everyone thought we just wrote Deedee's care handbook out of divine inspiration... What is there are the facts of what to do for her. We didnt invent it (even if we do have very creative imagination). Everything we do has been following the NIV suggested by DrBach and his books and followed by hundreds of parents that belong to FSMA and believe in the NIV as it does allow for better quality of life on such critical kids (Im talking about SMA Type1 especifically... People get biased by revious experiences with types 2 and 3 especially nurses that think that SMA is the same in all...).

Thursday: Still no afternoon nurse available, but at least the company is working with us again, and communicated with DrBach, and Neverland is happy again. After giving us almost a big heart attack. I was really bad for like 4 days in a row, with a pain in my chest because of the high stress... Felt just as helpless as when we were in our hometown's hospital... I'm very grateful for the SMA forum. Their insight is definitively what keeps us going.

Friday & Saturday: Back to daily routine, I guess... New nurse on Saturday was ok, both were like having Mary Poppins at work.

Me, I have a project semi-final for Sunday night (now) and class ends next Saturday so it is all high intensive work. Plus I must load the prospective boss website so there's something besides the construction warning and I actually get paid.

Will keep venting...

10-4

OVERRATED

2008-11-17T11:43:00.002-04:00

Same old story...

Sleep? Resting? Quietness? Nah. I'll sleep when I die. So it seems... It's been quite busy the past three weeks. I wanted a job... so I got it. But the being jack-of-all-trades is a bit... tiresome? Being tired? Overrated too.

The projectname: Boss-In-Process Version 4.0
The tasks: Webdesign/CEO Assistant/Anything that comes to mind
The good news: Love it. Creative skills FINALLY put to use. Interesting projects within projects. Looks like my degrees in business can finally get out of the vault of the lost.
The bad news: I need time to do everything I must do, and my other boss is too needy (yup, remember I have Bossy Baby 1.0.2 Revised version. And it is her command that must be obeyed first... so imagine...

I am running towards the whim of Bossy Baby and BIP. And in between, I'm trying to complete a diploma on web design. Insanity rules. Sleeping 2-3 hours... What a waste of time, huh?

Well, I hope that one thing helps the other somehow. Will be using job site as project for my next class, so I will kill 2 birds with one shot. Cannot explore being too creative now, if I want to survive. Hopefully by the second week of December my dearly beloved hubby will be available 24/7 to obey BB and so I will be free to complete everything from Project BIP. Assuming I make it...

Until then... I will survive! (Sing along in a loop so I will believe it)

And in the meanwhile... Trying to get a certain apartment in a so-so place that is at least accessible to some key places for us. It would be good to get it as it would take a big stress off us... the bad thing is actually moving. But until things are really certain, that is just a tale of what if.

10-4

Pondering, pondering

2008-10-14T00:08:00.002-04:00

... testing 123...

Let's see...

Housing woes: Well, money is very tight to nothing. Paperwork submitted to an organization that may be the key to finding a home for winter. Potential employer helped a bit, but his search lead to a handicap non-friendly place with tight doorways, so that's a no-no. We expect a call on Wednesday from the lady of the North, hopefully it will have good news... Maybe a senator will help with this quest as she deals with puertorrican affairs. We need a place that is rug free and with wide doors to maneuver Deedee (bath and bedroom).

Webdesign diploma: Hanging in there. Another A for the vault, new course just began. This one is Screen Graphic Design. Hope it helps with the prosective endeavour at hand. It all is going fast, and I am surprise at me actually learning something (and here i thought I knew everything)...

Jobhunt: Well... Prospective something in the air... Got a prospective boss for prospective webdesign and prospective virtual assistant thinguie. Using this month as trial to see where this can lead. No money discussion on the table yet, so testing waters to see if I actually take the plunge. Dont know... main problem is everything is safe until I do something and baby decides she wants more attention than usual, which leads to me with no time to spare as I am beyond tired... But wait! Tired is the new trend! Sleep? Overrated!

Nursing woes: Ok, so our day shift nurse is cooking. But she's having many personal issues so we are trying to be supportive with her (remember, we were born under that star, so it is a circle). Day shift is good, but I am actively involved in everything so I need hubby here at evening so I can study and do prospective experiment... Cannot deal with night therapy assitance, so the bright idea of night nurse comes back to the table. We began this today... goth the owl shift for a nurse, 10pm-6am. We will test this this week... Hubby is not liking it, and me... I dont know, I just know we need a bit of help. Day and me is ok, Night and him should do the trick. Its the only way to balance ourselves out. He's studing, I am too. Let's see how it all turns out. In the end, its the Deeva who decides our fate.

Daddy's affairs: School is working well, he's learned a lot and is putting it all to good use at home. He will begin his practice at a senior nursing home place next week. Hopefully at the end of this he will get a job there, if all starts align for that.

Deeva's will: Well, so far so good. Basically her doc says she is fine, its just that she cant cough. Is that good news? LOL Well... All in all, it is. She cannot move, but she can live with that. The lack of cough is the problem because thats how pneumonia strikes and destroys. So... We are doing a good job at keeping her lungs clean. Pat on the back. Teething woes in sesion but we are handling. The news about her being able to sit a bit is AWESOME. This changes many things in therapy. We'll see what's next... Switch and toy should be here within a week, so that part begins. And her cooing is getting better, as you can see she is actually trying to communicate her own way.

Life: Hectic. We go to bed at 2am most days... to get up at 8am... Not enough rest, not enough sleep, too much stress due to the famous housing/money/job issues tagged along the baby's illness issues. Awareness must be kept 24/7, ability to react 24/7, good disposition... ok, maybe 24/7 (I try, really)? But all in all, we KNOW that we ARE blessed. Someone is REALLY watching over us, over Deedee. We know somehow the way will be put before our eyes so we follow. This time we need to be helped. I cannot handle everything, so I will follow the lead. My energy is almost in zero... need to recharge.

10-4

Help us help Deedee

2008-10-06T12:06:00.004-04:00

... Here's how

CURRENT FUNDRAISING CAMPAIGN FOR DEEDEE

SICK

2008-10-06T11:58:00.003-04:00

...

Ugh! Hate this weather! It is too cold, period! I went on Friday to see the doctor, and all my results are fine. Sugar a bit high (not for my normal self... actually its in 165 so that was something good)... So he made some adjustments to the prescription, minor ones as he doesnt want to screw up anything else. :P Problem: Going there and coming back. Took the bus... transfer... and so so... The wind is too much. My sinus was hit right on target. Spent the weekend feeling miserable and sick... My head is still spinning, so I'll be back to bed if miss high maintenance allows for that...

Also, today starts the Fall session of AIO, so a new class starts. Screen graphics design. Hope to have fun.

Getting ball rolling about paperworks and stuff for Deedee. Hopefully things will look up. We have to stay here in NJ, so... to make lemonade from lemons... Hubby's Avon thinguie is taking wings.

And we have a newcomer in our family, a baby stray kitty that got lucky and found us. He was half dead, but has made a big comeback. He/she was named Ash. Let's see if he copes with us...

Frustrated...

2008-09-15T18:21:00.002-04:00

to say the least...

It is the time to re-evaluate things and make big choices in what to do, what to do... Things are not so simple... Two choice: Moving to Fl, or staying in NJ.

Fl seems like the Holy Grail right now. With the menace of winter around the corner, it glows as it is an environment that is close to PR tropical feel. We are searching the ways to do the move... What about the SSI, Medicaid, Housing... We need to know everything before leaping... And it all has to be within the next two months. We should move by November if we are to do it. Later will be too late. Big problem is daddy taking CNA courses that end in December...

Newark... Ugh! I hate the place. Pollution is very high, and now with the ambience change I can really feel my sinus! Staying here would not make us happy because of snow... which we are not prepared for... The weather is bad for baby. We need to find a cheaper place, and a job (which keeps on an ongoing fruitless task). Money is very low, we are surviving, without much help.

We don't know what else to do... Its like being trapped between the wall and a sword.

10-4