Twinkling Razzle-Dazzle

...

Days are going by slowly. The chilly madness is suddenly replaced by hot days that are unnerving. Some help may come in disguise as we still quarrel for the neverending task of finding THE job… In the meantime, being minions will do… Baby is well, hubby is well. All alive and kicking, I think…

I’m increasingly sad. I dislike the current situation of nowhere to run to nowhere to hide, but much to face and conquer. Played the fight so well, but now the plateau denominated “waiting game”is driving me insane. Looking for something to keep the sanity check, finding solace in beloved Lady of Sorrows and journaling, but still… The uncertainty of it all is beyond frustrating. The living one day at a time means no real control lay in your hands, so you must outwit whatever is thrown your way… Oh, the thrill of the uncertain! For a while it’s nice, but it has its price…

The appreciation of what you have changes. The deliverance from the superfluous to the important is both intoxicating and chaotic. Each morning we face a sunrise hoping a miracle lives on. Each afternoon we guard the miracle and marvel in its radiance, in its defiant truth… Each sunset brings along the belief that must keep burning within our zenith… A belief that struggles against the enemies of despair, of destiny… It is a paradox to look into life and know the imminence of death, up close and personal! It is important the here and now, the making of… the journey. It all is in our face, it all brings the greatest of beauties, and the most terrible of pains. This is our daily truth, our daily conflict, our daily despair, our daily hope… To acknowledge a heart full of lovely sunrises and sunsets, to acknowledge a heart entwined in thorns.

I live the greatness of love. I live the greatest horror. Day by day the rose let go of a petal… One by one a lovely road towards oblivion takes shape… lovely shape, lovely perfumed shape wrapped by mystery and shadows. Nothing else to do, but to trust and go on… to believe and live for real. Fear is the greatest enemy of everything and everyone… Fear destroys hope, destroy possibilities, destroys what can be and has not been yet… It is fear we must battle so we can smile through it all, so the miracle keeps its beauty, so the meaning of life keeps on revealing itself to us. And it is not easy at all… Wondering why is a waste of time. Scheming the end is pointless. The goal must be ongoing, else everything could fall…

When there is too much time to actually think, you realize it is better not to… Because thinking will drive you mad. Sometimes it is better to keep doing… to keep swimming… So strength and will keep on being pillars in your heart. So the journey blinds you with its razzle-dazzle… So an alternate reality can be cast at will.

10-4

Update

...

Passed drug test so they'll call in the middle of June or something to take orientation thinguie... Should be working in July. Yipee, or something. Grateful about it, don't get me wrong, I just wished I could find something art related, not techie... Eeeeck! Good point: I'll get updated in matters of operating systems and software... which is good. I was in a rot for a while.

Finance places driving me crazy with their neverending calls! Geesh! I explain the same crap almost DAILY... Customer care, my ass! One out of three is trying to work things out... The other two... Not polite. They even mentioned using the fundraising money to pay them. Ok... Where the "it's not my money, and it is for medical baby emergencies" is completely ignored... (Sight) And I'm sorry, but we cannot touch Deedee's money because we KNOW she will need MORE than that!

No clothing yet... (Sight) At least I know I'll have to wear an uniform, which is GREAT! I'm all for uniforms. It makes things easier. Hubby left some laundry at the laundry place by mistake, so I've got even less clothing... I hop that the right boxes arrive soon. Three were delivered last Sunday, all of them by chance had Deedee's clothing and stuff. Nothing for me. Positive side: Deedee has enough until her birthday. Con: I am starting a Ferengi wife clothing line...

House, still an afterthought. The realtor has not moved much, the bank made my life miserable to send me the stupid cancelation balance, and the potential buyer may have changed his mind after a month and a half has passed... And I need to sell in less than a month, May is not paid. We all know what that can mean...

Groundel had an operation yesterday. The doctor cut some bone, did something to his Achiles heel and some insitions in his leg... Night of the Living Dead, take six? (Sight) Talked with him before midnight, he seemed to be bearing with it all... Send good vibes his way, please!

Baby is fine so far, hubby is fine so far, and the dark cold days have been replaced by sunny cold days... Wheeeeeeeeeeeeeeee...

10-4

At week's middleground...

Neverland still floats... just like sh...

FAMILY:
Baby doing just fine, with the mask and without it. Hubby behaving pleasantly and limiting his playing time...amen... plus looking for a job. Auntie alive and kicking, mommy as well. Maybe the Texas crew will be here next weekend, if it all goes as they planned. No news from the Olivieris, no new from the Florida Clan.

FRIENDS:
Groundel happily receiving the 5 star treatment at the hospital, as usual. He should ponder getting some shares in there... or getting a job in there... Who knows, since by now they know him so well... :P It all looked very bad the first days, but slightly it all is heading towards same infection he always gets because his half-foot is not sealed... Hopefully nothing new-er. Maybe he'll be out by Father's Day...

LightShadow getting around, doing the amazing things she does with the little time she has... Wow! Talk about magical abilities! (Or the abilities of the undead...

Coriolis still out there in the Twilight Zone... Hello? Echo!!!!!

Just found out about a very old friend that was lost in translation... but that is still alive and doing a very good job at surviving! :P Zolanch, glad to meet you again, and again, and again... It is funny that whenever a major change occurs, she appears. Imagine this: She was even there the day I was born! And she was not even born yet! Talk about synchronicity!

Recently added Lynnette's blog to the little witch's and mine... I always forgot to do so, but hey, FINALLY... And she is someone who always write something interesting! Alas!

ME:
Finally ventured out yesterday, took the bus on my own and didnt get lost. Finally got an interview... High odds that I'll be hired in a very ironic place (LS advises may be called upon)... Got chocolate cake and chocolate ice-cream for Mother's Day, a crystal base with magic beads and a baby going berserk with the diapers. What else could I ask for?

Actually, I could ask for a little more intervention from friendly neighbors... Yup, some interaction would be good... Oh, well. Just got 3 fine art posters that I ordered for the living room: Romeo&Juliet (as the one in my wedding invitations), The Accolade (lady knighting a squire) and The Crystall Ball (witchy fortune lady staring into crystal ball). These are classics paintings, should give some character to the place. Hopefully Lulu will be able to send me my posters from my ex-office, would love Vincent in the room's door... Yup, still a poster person...

Got some poster-papers so I will do some Ariel-Tinkerbell art for Deedee's room. Finally! Yup, it took long to simply find them! That should provide some entertainment for the next 2 days...

Also, got a scrapbooking program. Simple but it will help. La vena me la pide.

I just got very disturbed by Sora singing with Donald Duck and Ariel... I have seen everything now!

10-4

FREE at Last

I may have some strange powers, or something... but as I wrote the latest post, my grandfather died. So, finally he is at peace with his loved ones and without any hurt or pain... Free at last. Just as it was done with his wife, he wont be placed in a funeral place, but cremated today so he'll be taken to the grave in a small urn... No days for people to visit him and mourn him, no days to reminisce on his memory and life... I have nothing against cremation BUT I am completely against doing just that. I think a corpse should be placed in a chapel so family and friends can say goodbye, so prayers can be done properly... then cremation, then burying... ANd then the mandatory rosaries. That choice of simply paying for a mass dedicated to the memory of people is stupid. To me it has no value. To me, praying the rosary while guarding the corpse and afterwards is the real way of bringing light to the spirit. Paying for a mass has no real emotional value. That is my humble opinion, which no one has asked for, I know.

So... I am REALLY worried about Auntie now. I know she is alone over there in the island, and no one else really cares about it. To each with their contience...

Still no news about Steve. I am really worried about him. I hope that someone, ANYONE, is taking care of at least bringing some snacks to him... His " i dont want to bother anyone" themesong places him in the hospital... I know...

If I had the money to do so, I would solve everything. But I dont, so I cant... My thoughts and prayers are with all of those who need me.

10-4

AND NOW, A DEFINITE UPDATE

... amen...

FAMILY
In Puerto Rico noone can hear you scream… That should be the slogan for them. Ugh! Sheez! Why? Simple:

Grandfather is almost dying at that home in which he was placed. Not taken good care of. Not living just being barely kept alive. Not recognizing auntie, not opening much his eyes, and doctors are not optimistic about his future… A death foretold. But sincerely, THAT would be the best thing for him. Being forgotten in a home with onle a mandatory visit a month, a quick one, is not worth living. He needs to be with his wife and with his mother and father… Enough is enough.

Auntie: Noone visits her… Noone but LightShadow and Groundel when they go to check the cats, and once a month when my mother shows up to take her to the grocery store. Now she’s missing us. She thinks we’ll be over there soon… I wish. What Deedee needs is not in PR… It is the only thing that truly saddens me, not being able to be there for her as she deserves. Many times I wonder what to do, as I KNOW she needs me. We fight all the time, but we love each other the same way…

Uncle: Undergo an operation which was successful and is recovering in SJ. As usual, I know now but noone said anything about the operation, etc… Communication… None… Nothing changes…

Mother: Not so well, as she and her hubby are STILL with the skin illness, plus diabetic trademarks. But, since one tells them what to do and they don’t do it…

Florida Uncle: Has called various times to check up on Deedee’s status. My cousin has called him also trying to find out wherabouts. That’s surprising.

Everyone else: Haven’t heard much of anyone else. Maybe people got sucked into a black hole or something


FRIENDS
Groundel is in the hospital again. Well, he was off it for 4 months… So I guess it was due. Not taking his insulin and not telling people what he should… What to do, what to do… He’s at Perea, Room 308. Please call/visit him, he needs all the support he can get. And it drives me psycho not being able to be there….

LightShadow: Working/working/working/caring for her mom/ caring for everyone else/ working…

Coriolis: Missing in action. Don’t know what his problem is, and since he won’t tell or call back, I guess I’ll never know. I don’t get such behaviour from someone who used to call me “ best friend”… Guess that’s what happens when you are forced to live in someone’s house for 3 months…


CATS
Being kept plump and happy by auntie. The report from Groundel and LS is that they are ok. I wonder if they miss me… My Kyonene… My Isis, Crow, Set, Kali, Roxy, Michita, Cyric… What to do, what to do…

BABY
Happy, using nasal mask 20 hours a day, mask-free 4-5 hours a day, stable, plump and amazing us day by day

HUBBY
Taking care of baby, looking for a job, filling out forms for government aids, making things happen. I’m proud of my mage, he’s been growing up, coping with things, coping with demanding me. Always keeping the focus of us, of his beloved family, of what is best for Deedee. Circunstance has made a man out of him.

ME
Sometimes hopeful and happy, many times feeling isolated and lonely. Being confined to 4 walls with noone to talk to but baby and hubby… The help is getting here, but it is not the same… Psycho about getting a job, psycho about baby’s care. Hating the weather changes. Hating some people’s cold shoulder. But what doesn’t kill you makes you stronger, and this is not a picnic… There is purpose and goal, so the way will reveal itself in time. I wonder about the decisions, about if this was the best choice… But no question about one thing: Baby is better because of the care in here. True friends have been revealed, and hope keeps fueling my will.

Any questions?

Is this for real?

I just erased a long post... So I'll be back later with an update... Argh!!!

Burocratic Shit

...

I am so damn tired of all this shit about government agencies and their not doing what they should for the public that really needs it! I'm beyond upset with the latest news about Catastrophic Funds and what it said it would do and now seems to be trying to back away from doing! Everythig depends on their helping us jump to the other side... we trusted their word... so we get this... a re-submitting of a case to see if they can grant a yes... Grant? Yup... Grant... I pay taxes, right? I have busted my ass working for more than 13 years without help of anyone but my two hands... Because of that, and the fact that I studied and, OMG, I didnt have children as a rat would, I am sentenced to have no help at all from the government. I need to be jobless, mindless, and full of shit so I can get government aids. Thats this island's justice.

I am pissed. I am tired. I am unnerved. I am stressed. I am in a very bad mood. And I feel every effort no matter how fruitful has been futile... All because the friggin system that we have only do something for the corrupt, the political bitches and the "mantenios". Hope... So difficult to get a grasp of that small almost intangible thing... But I do have hope. And I hope it doesnt get killed next Wednesday.

Baby can die any minute, and the urgency about it is so baffling! It is true that the only belief we can have is in God. He is the only one that doesnt lie, ever. I know He will show us the way, somehow. I just wish that for once it didnt have to be the hard way... Someday the purpose will be revealed... but right now it is very taxing and draining... A break? Please? Is that so much to ask?

10-4

WINDS OF CHANGE

...

At hometown trying to sort things out, preparing luggage just in case, tying the loose ends... Status on everything? Here goes:

HOME: A big mess. Was trying to sell it asap, but seems it will have to wait a bit, just a bit... If I cant sell by end of March I will have to give up the house in April, period. Will not be in the island by then, anyway...

FAMILY: Auntie thinks just praying fix things, and I have nothing against prayers BUT they also need to be followed by action. God send the fishing but one must dig the bait. Some are helping out in their own special way. Let's see what comes out of everything...

FRIENDS: Strangers have been friendlier than friends, and this is not high school... That has been the big irony of it all... But all in all... We are grateful for the small details that people have done for us. We are grateful for LightShadow's diligence in fundraising for the baby, we we grateful for Coriolis's granting shelter under this big snowfall, we are grateful for Groundel's never-ending concern and love for Deedee, we are grateful for the people who dont know us and have move things so we can get Deedee to the US mainland, we are grateful for prayers from children and elders. And we are grateful to God that he has granted a longer stay for DeeVa in this world.

BABY: At the hospital, intensive care, intubated, waiting for the date of the big flight. We have an air ambulance (AMEN!) and will soon be taking her to the best p[lace to treat her disease. All this time she's been a trooper, showing love and will for living.

DADDY: Keeps on being his random crazy self, taking care of baby and of his mad witch. He has been a constant caregiver, completely giving himself to the cause... A constant support, a constant light in the darkness. He's never failed to keep the hope, the belief, the dream... Has been punched by reality too many times, but stills gives a smile and moves forward no matter what.

MOMMY: Keeps on being as bitchy as ever, pushing things so they get done. Keeping sanity in the midst of chaos. Keeping belief and faith, while fighting every odd. Very edgy, very stressed... But nothing will stop what needs to be done.

We are both sad that some people don't really understand what we've done, why we are doing everything... We are doing this because Deirdre Valeria is there. You just have to be with her to KNOW she is there. She reacts to everything, all the time. She is alive and aware, highly intelligent, and with deep desire to live. She deserves the chance. We are the only ones who can grant that wish.

Some people think it has been insane to leave everything, that our world has collapsed to the worst... Well, this is an eye openner for you: We hated our lived before Deedee was born. Nothing substancial ever happenned, nothing mattered. She brought us a reason to live on, to believe in goodness. Thanks to her we have seen the good that still exists in this crappy island, the people who don't turn away but give a helping hand without even knowing you. I will loose a house? Not that we liked it anyway... We have a home wherever we go. What about our jobs? We were angry at our jobs anyway. Now we have a reason to get out of our comfort zones and try something else. So life has been stirred upside down,... So what? We stand together no matter what. Deedee has given us many lessons in what is TRULY important in life. She has shown us how to REALLY LIVE. And that is... Do your very best to enjoy every little miracle around you, your family, your friends, your pets... a sunset, the rain... Every little thing matters, has a purpose, and can bring you happiness. Having everything means being able to say that you are at peace with yourself, that you reach out to others to help them grow, being able to smile because your heart dictates so.

For many, the Mage and the Witch have nothing... But we have everything. We have true love in our lives, and we have around us people who truly care for us. And most important of all, God smiles when he looks at us. I know it.

So, we are getting ready for a big change. We will leave the isle soon, seeking the best medical care for our DeeVa, so she has a chance for living life to the fullest. We love her, always have and always will. Whatever happens will be guided by God, as everything is in His hands. There is a big purpose for everything that has happenned... For us, for Groundel, for LightShadow, for Coriolis... God's chess game goes on. In the end... Everything will make sense, everything will awe us... for the best.

10-4

Looking things up

...

Checking the cities of Madison and Newark so we get a feel of what is to come. Madison "Mad City" is very interesting. Low unemployment, highest people with doctoral degrees in the country, economic growth projects... Beautiful place, very liberal and varied... And right now very covered with snow. Temperature ranges from -XYZ to 87 in July... 87 is very hot... OMG!
Newark... Hectic. But has many aids for low income people. University Hospital has many financial aids. It was funny, on all 3 top doctors list DrBach is always there... And they havent heard of him in here... Right!

Traveling has become more of a burden because of the road accidents that keep being more frequent. Yesterday we managed to go to the Salvation Army so we could get winter coats just in case, and upon exit one of the tires had a big nail on it... We went to the auto service place, and they wanted to sell us a new tire... So basically we changed the tire for a spare and will see tomorrow at a tire place what can be done about it... It was a new tire! So this really bothers...

On Friday we visited the medical plan and then cathastrophic funds... There is a big difference between phone and in-person. Perhaps progress was achieved... We'll see.

Today... to see the Deeva, and to try sleeping at night... Tired, and drained.

10-4

Mad

... at all times, 24/7... And proud of it...

I don't know why I bother trying to gather as much information as I can to give to the right people... or at least to the people that must have the knowledge... I have been wasting my time. When I think I am doing some progress, it is the oppossite. What is the use of trying something when you don't really want it to work? That's basically what I should be asking the doctors... I feel cheated and offended. Trying things out to prove us wrong, just what is that.. People give swift punches with just words. We have been so naive as to believe that getting information from the experts would ease the whole picture... How wrong! We didn't count on a system that works layers within layers, where the patient is a number translated into an institution's desire... How wrong of us to try swimming against the stream... for the sake of belief in progress... Something not so new cannot be exposed simply because it is different. I forgot, doing things differently labels you as insane even if somewhere in the world it is the right thing to do...

I don't feel too rational right now. I have tried being polite and nice, I've been a "sport" and danced to the music played by the people in power. For what? This is not the era of chivalry, of values, of doing good deeds. In this era only the strongest, loudest, meanest, and irreverent survives and gets away with what they want. Why things must be this way? Why there is no thirst for knowledge, for learning, for solving problems putting yourself in the other person's shoes? UGH!!!!

Hospital staff... The doc who wants to try, the doc who desnt and the one who wants to prove us wrong. Lovely picture. Then the therapists that work... and the ones that wonder why the heck they give them more work... And so one wonders what are THEY up to... A HYBRID they say... They want to make a hybrid of their process (safe tracheotomy) and the NIV (too much work for them). It wont work. Really... I dont need an astrologist to tell me that future...

So... Only turn to take, sound prayers to the Allmighty... He knows our hearts, who's been good and who's been not so good... He knows which cause is worthy, and which isn't. So I let Him take charge... Do what You must... Nowhere to run to, nowhere to hide. Do Your magic, as You always do to those pure at heart.

10-4

We need help...

ASAP! Click on image to read the information on the ad.

Anniversary, Extubation, FundRaising

... the fun never stops...

Living as if being trapped in a long mini-series based on ER that turns into horror-drama each time the sun rises and each time the night falls...

DeeVa was extubated today to BiPap. Let's see if it works... Still, we need $27,000 to move her to US Mainland. Got help?

The Witch and the Mage turned One Year Old together. Seems no one cared much about it... Well, at least our DeeVa smiled about that, and decided to let the BiPap work as a nice little gift to us...

Groundel getting around, helping out for DeeVa's sake.

LightShadow becoming a DeeVa activist. There is no end to her ongoing quest! Yay! Next step: to rule the world!

Coriolis being a bit cryptic, a bit Ronald-Mc-D, and a bit psycho (now he's kitty hunting... what the world is turning into...)

So... Drama goes on, excitement and adventure goes on, DeeVa goes on... And the Story of Us goes on... Until the end of time.

La-la-la

10-4

Tournament of Basketball & Softball in Lajas

Pro-FONDOS DEIRDRE MEDINA RIVERA

Yes, it's tomorrow during the day in Lajas, PR. I was unable to post it before, lack of time. But at least here it is! Everything consumed there will be for Deirdre Medina's cause. If you have a team, let the contacts know. Thanks!

HELP NEEDED

...


5 months baby DEIRDRE V. MEDINA needs your help!
She has been diagnosed with Spinal Muscular Atrophy and needs to be taken to the United States for proper Non-Invasive treatment. The medical insurance does NOT cover any transfer or hospital expenses withing the US Mainland, so we need your help. The funding account is at Banco Popular of Puerto Rico, checking account # 041-473272

What is Spinal Muscular Atrophy (Werdning-Hoffman Disease)?

Werdnig Hoffmann disease is a type of spinal muscular atrophy. It is a rare, inherited progressive neuromuscular disorder of infancy characterized by degeneration of groups of nerve cells (motor nuclei) within the lowest region of the brain (lower brainstem) and certain motor neurons in the spinal cord (anterior horn cells). Motor neurons are nerve cells that transmit nerve impulses from the spinal cord or brain (central nervous system) to muscle or glandular tissue.

Approximately 80% of SMA falls into the severe category (SMA1). Infants with SMA1 experience severe weakness before 6 months of age, and the patient never achieves the ability to sit independently when placed. Muscle weakness, lack of motor development and poor muscle tone are the major clinical manifestations of SMA1. Infants with the gravest prognosis have problems sucking or swallowing. Some show abdominal breathing in the first few months of life. Muscle weakness occurs on both sides of the body and the ocular muscles are not affected. A twitching of the tongue is often seen. Intelligence is normal. Most affected children die before 2 years of age but survival may be dependent on the degree of respiratory function.

For infants who appear to develop normally during the first months of life, muscles of the pelvic, trunk, and shoulder areas may initially appear to be disproportionately affected. With disease progression, diminished muscle tone and weakness may gradually spread to affect almost all voluntary muscles, with the exception of certain muscles controlling movements of the eyes. Intelligence is NOT affected.

Infants with Werdnig Hoffmann disease may lack head control, may be unable to roll over or support their weight, and tend to lie relatively still, with little or no movement (flaccid paralysis). In addition, they may develop difficulties sucking, swallowing, and breathing; have an increased susceptibility to respiratory infections; or develop other complications that may lead to potentially life-threatening abnormalities within the first months or years of life. For infants who appear to have normal development for several months prior to the onset of muscle weakness, the disorder may tend to have a more slowly progressive course.

Werdnig Hoffmann disease is inherited as an autosomal recessive trait. Molecular genetic testing has revealed that all types of autosomal recessive SMA are caused by mutations in the SMN (survival motor neuron) gene on chromosome 5. Deletion of the NAIP (neuronal apoptosis inhibitory protein) gene that is close to the SMN gene is also associated with SMA. More patients with Werdnig Hoffman disease (SMA1) than other types of SMA have NAIP deletions. The relationship between specific mutations in the SMN gene and nearby genes and the severity of SMA is still being investigated so classification of SMA subdivisions is based on age of onset of symptoms as opposed to the genetic profile.

CLIMBING THE MOUNTAIN

...

Gosh, it all has turned beyond hectic, beyond tiresome... But hope and belief fuels our actions everyday. Our DeeVa is holding on at the hospital, had her Gtube-nissan wrap surgery, and is waiting for the cough assist to see if she gets extubated. Things are moving, slowly but certainly. We need to take her to the US mainland so SMA experts can actually customize the SMA NIV protocol for her...

Yesterday the bank account to gather funds towards this purpose was created. Banco Popular de Puerto Rico, fundraising account for Deirdre Medina is 041-473272. We will appreciate every cent. I will post the flyer as soon as I get it (LightShadow has been working on that, and many other things).

HOME: Home is where the heart is... So right now, home is the hospital.

FRIENDS: Well, they are all keeping themselves busy, and helping DeeVa one way or the other...

LightShadow drowned in work, helping Groundel, helping DeeVa... She's our spokesperson out there in the Wester area... Well, her hands are quite full, and she smiles anyway.

Coriolis, giving us shelter all this time that we've been stranded in Area Metro. He's provided technological assitance to moi so I can keep on in the Internet, as well as he is the co-founder of Deedee's benefit account.

Groundel is in Hormigueros, finally out of the hospital last Monday. He's been cleaning up and putting stuff together, and worrying about Deedee non-stop.

TheMAGE: Tired... Hopefu... He's been the driver all this long, the clown so Deedee laughs continuously, and as loving as ever. He is very tough underneath the soft mask he always wears. He has kept me strong, keeping me from collapsing or surrendering. I love him deeply, and soon our first anniversary will creep on us... A year that has passed changing our lives forever. And I would not have it any other way.

ME: Tired... Very tired. Sleeping 4-5 hours is not good for me. I NEED 9-10 hours to be fully functional... but the need to gather all the info I can so I have the tools to fight for Deedee forces the sacrifice. Hopeful. I truly believe that Deedee will prevail, I can feel it each time I look at her. She has a big purpose ahead of herself... And we are to facilitate the way...

10-4

UPDATE 2008

Well, some quick changes... So so far...
-Deedee was transferred to the Pediatric Hospital in San Juan... So far 2 thumbs up
-We will be able to be with her from 10am to 9pm... Another 2 thumbs up
-Called my boss and may be able to get work at our SJ office, Yay!
-The Mage and I are staying at Coriolis's Inn for a while
-Setting up my house for sale
-Some people setting up a " rifa" to get funding for Deedee's travel to US
-Some people checking up things for starting a fundraising for Deedee
-Life is definitively faster in this new lane... So keep tuned!
10-4

A Year about to End

... Ahem...

What can I say? This year was something very very DIFFERENT. It was the BEST of times, it was the WORST of times... Yup, that's how to describe it...

The BEST:
Marrying the Mage & Deedee's birth. In my whole life, and that is 34 years, I have never been as happy as when these two events collided against me. Not even when I graduated with my MBA in hand... Yup, THAT much happiness!

The WORST:
Deedee's hospitalization because of lung failure, and possible outcome of SMA Type1... Which will lead to some life changing events in the future... for all of us. The drama has been taxing, heartbreaking, unnerving and simply a live-action horror movie. And this, followed by Groundel's constant hospitalizations thanks to the foot-that-wont-heal. By now I know all the hospitals in the area, and it is NOT a nice thing to know by heart, true story.

So... The Mage and I hold on to our belief, and we prepare ourselves for a very rocky road ahead of us... We believe Deedee will heal her lungs, the waiting game is the worst part. Anything can make or brake us. Bad sleeping, erratic nerves... The uncertainty of news, the getting better 3 steps ahead to get worst 6 steps back is really REALLY hurting... But we hang in there. Deedee wants to stay with us, we want her home... And if she is to live with SMA so be it, we will do everything within our power to fight that illness and give her as much time as she can have of happiness, love, warmth, thrill, adventure... you name it.

Seven months, one year... Ten... Forty... It is not quantity but quality. Many men die, not many men REALLY live. And we will make sure that whatever is the number of her stay in this rotten planet, she will REALLY live. She already KNOWS the love of her favorite slaves... parents... you name it. She KNOWS she made a big difference in our lives, and she KNOWS she will make a big difference... period. She is here with a great purpose ahead of her. And we are to be the facilitators... the guardians... the action-starters. It all began with us, and it will not stop. Things will be difficult and will test all our wits and our courage... But we will look back and laugh. Because in the end, we will win. Together, as we are now... The DeeVa, the Mage and the Witch.

And besides the family core of the three of us, the extended family that shows us we are not alone and gives us courage as well lives on...

Groundel has a strange link with our DeeVa, seems he is her magical familiar... And he cares a lot for her. It has been hard for him being in the hospital, knowing all that's been going on with DeeVa and beeing able to do nothing but stand on the sideways praying... wishing... believing... I was able to give him a picture of DeeVa taken on Xmas day, so at least he can see her. Our funny mischievous Deedee...

LightShadow has been deeply involved, granting her time and support daily. She has been a model of a godmother and a very good friend to the Mage and me, and to Groundel. Her presence inspires certainty, tranquility and action. To all of us.

Coriolis have not been around physically but has been here in spirit, calling all the time, lending an ear and words and good thoughts and prayers... Much needed... Much appreciated. Always sharing the joys and the sorrows in black and white. Complicated, and I wouldnt have it any other way.

L. and Karah have also been of great support, even if they are beyond the seas... Who knows, maybe we'll get to meet sooner than we think! So many wheels are turning at the same time!

The surprises that Christmas dragged along were from my work, where one person (Onis) has been constantly calling to know what's going on, and another four (Marta, Xionara, Raquel & Sylvia) have dropped by leaving some details in the way...

And last but not least, Raven made a brief apparition if only by email, but a useful one. Thanks for the references.

So, let this year end taking away all that is BAD, and let the new year bring on plenty of nourishment for all that is GOOD.

I raise my glass of wine and wish you all PEACE, LOVE, PROSPERITY, COURAGE and much HAPPINESS for the new year. May GOD bring much BLESSINGS to your LIFE!

10-4

PS: Deedee's latest update in her blog: A Little Mage in The Family

Merry Blues

... Joyful sadness

It is all bittersweet. Celebrations, lights, knowing that it’s just 2 days for Xmas… Oh, we all made many plans for Deedee’s first Xmas. I wanted to take her to the lighting of our church, LS wanted to take her to the Siervas de Maria lighting, and we were to have a family gathering on Xmas eve… I guess we will have a celebration even if it is quiet. After all, it is about God’s birth… But the sadness of knowing Deedee is in the hospital and we cannot even get her in our arms is just too much… Her latest news, here in her blog, A little Mage in the Family: The sound of music.

All in all, it is better that she stays for a long time, if it means her healing completely. Her lungs need to get healthy and strong… We know what must be done… That it is hard, yup… It is. That it breaks our hearts all the way, yup. That too. This is the time for family, and although we are not together physically, we are together in spirit. We miss her, all the time, in everything we do. Just 4 hours a day to enjoy her presence, touching her little fingers and loosing ourselves in her eyes… is not enough… How can it be enough!

The Mage and I both have made some arrangements at work, hope it all ends ok. Whatever. Not thinking too much about that right now, more important things to take care of.

About Groundel… The forecast for him is 43 days in the hospital, if not more. He’s got bone infection and one kidney is very sore, so he’ll have more tests. So… Xmas, New year and Three Kings Day are kinda off-limits for him… I also know he’s been worried sick about baby…

All this drama is getting to be too much. Very draining. Very tiresome. But… We all will pull trough. Yup, together through the good, the bad and the ugly. With help from the Divine, courage, will and faith… and help from a few good friends…

10-4

Baby holds on...

and Texas Weeps

Baby holds on. She got a new tube in her chest to drain her faster... And still wakes up ready for songs. More on her blog, A Little Mage In the Family: Another Day

In Texas, Maria Luisa's mom died. An old, fierce Cuban with many stories to tell, she battled diabetes and many other things for long. Now she rests in peace, as she knew the love of her family and now she knows the might of God.

10-4

UPDATES and then some

...

The winner of the heartless-coldest-meanest comment of the day: “Para que quede vegetal major que se muera”. Comments that REALLY pisses you off, and then they wonder why you say nothing to the so-called “immediate family”. Well, you-know-who-u-are, my girl has no brain damage thank God, but if she had it would make no difference because I love her. But I understand, it is a word that you simply cannot acknowledge in your dictionary if it is not glued to monetary gain. I believe in true love, a concept that you cannot even start to grasp, a concept that my husband shares with me as well. Our child is a gift, the greatest gift that we were granted. And all that matters is the joy she brings into our life, the light we see in her eyes. If you think it is a burden, ANYTHING for YOU is a burden… Then simply “Apaga el televisor”, or go ahead and change the channel. We don’t need people who even dare to throw comments like this without knowing anything about what is going on.

I had to get that off my chest, as I was completely appalled and outraged by such statement. I wonder if I had been born with anything “unexpected” if I would have been left to die because I didn’t meet the expectations…

So… Rollercoaster of feelings, of people, of many things… That said… Deedee is stable within the circumstances. Still draining her lungs. But, as I had said to everyone, she had no flu. The X-Rays showed she had no sickness or pneumonia. Just liquid, that right now is being drained little by little. The tube she had in her nose was removed, leaving on the one in her mouth, her chest and the monitoring wires. She needs more time to heal, so results arrive, so things move on. I believe she wants to be with us, she feels the love… and she will stay. I hope that by next week she leaves intensive care and is put in a room… And I expect her home to open her Three-Kings Day gifts. Details on Deedee's recent whereabouts are in her blog under Holding On

Thanks to everyone who has called, written, text-messaged and visited. The support is very much needed and very much welcomed. The Mage and I are trying our best to stay cool, be happy and positive around Deedee , and to keep the faith… And all of you have fueled our hopes.

In other news, Groundel’s pressure is a bit high, and now he also has been diagnosed with bad kidneys. He’s still at the hospital, room 458. Please call him, it is lonely up there in that far away place! Besides, that’s why he put up a phone! Duh!

I’ve got a small cold due to all the running in and out of hospitals… Blah! Just what I needed… But big deal, the show must go on, and it will!

10-4

PS: They requested blood donations for Deirdre, she's blood type O positive. I cannot donate because I'm diabetic so if anyone else can, you are more than welcomed to do so! The blood donation center is at the building just at Mayaguez Emporium's side (Santander Plaza), in front of Centro Médico (BANCO DE SANGRE 787-834-6099)