...
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
Sunday, February 24, 2008
Sunday, February 10, 2008
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
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
Wednesday, February 06, 2008
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
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
Tuesday, February 05, 2008
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
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
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