We were cheated into believing that we have been trying something in the best interest of Deedee. Turns out that the possibilities are overruled by people in power who humors us now to see if they can prove us wrong. I've never expected to hear such a thing... I thought knowledge, truth, simple facts could go a long way. Why make such a big deal out of something that goes to the point and is very matter-of-fact and simple? I thought there was a code out there in which shared facts and discoveries and successes were the main plate. But no... I was naive. Once again things blow in our face... Which are the real facts?
-We have been patronized. You know when some parents let their children run so they fall and then they say " I told you so"? Something along that line...
-There has been no true effort towards the main goal. It all has been an effort to prove us wrong. My question is: How can ANYTHING work if you dont follow the rules? A hybrid of the best of both worlds can be a good try, but it is not what was suggested... what we expected... what should be going on...
-Why people have to be so nearsighted? I dont know... Human nature? Just having fun? Maybe this was an interesting project in the beginning, and we were expected to give it up... The problem is that we are not fantasizing about anything, but there is proof things can work well if done properly. So we dont give up. People dont like it.
One day they we find allies towards our goal to extubate Deedee to a BiPap. The next day we have cruzaders for tracheotomy challenging us in every imaginable way. The next day we find a truce in the middle of a war, and a happy medium. The next day it all turns into a Trojan horse, a gift given with further intent... What are you to think of it all? How can trust be ongoing, constant? And in matters of life and death, trust is a most... Empathy, trust, will...
Mark and me, we are not happy with what keeps going on with our DeeVa. We are not happy that some processes are not constantly kept, and then they are expected to work. We are not happy with the lack of importance put on secretions versus the importance of oxygen. We are not happy with the suave mockery that goes on when we bring in facts or "clues" to solve the puzzle called NIV... We are not happy at the lack of interest in simply getting a full coaching on how to do this thing that they have not done before, not this way... Why they wont learn something new, a new choice for other people that will arrive at their hospitals... a choice different than tract or death. We are not happy at the fact that we can watch but do nothing, not even a little suction, when we know that there is no staff available at the moment because they are solving something more important... Policies that are stupid, people that create barriers... No, we are NOT happy.
We wish DeeVa could speak. It would be hilarious to listen to all the anecdotes she could splat at people... It would be priceless to hear the good, the bad and the ugly. But she cant speak... She can barely react to things... She cant understand what is going on, why mommy and daddy cant be there at her side all the time, why these strangers keep poking her with needles, why these machines are used on her. She cant demand attention, or affection, or simple human rights. She cannot even cry for milk, for she wont be heard. So, forgive US for being so paranoid about her care... for pointing out the big flaws... for trying to do the best we can do for her. We want her to have quality of life, we want her to have the opportunities that no one else would give her just based on her condition, we want her to be able to say in the future that she has the world at her fingertips, that she can do anything. Forgive us for being so knowledgeable, for bringing on facts versus fiction, for keeping our hopes high.
We love our DeeVa, deeply. We know everything that will try to break her... And we know just which things will keep inspiring her everyday life. Look at her, a little fragile thing that with just staring at you can break your will. She is powerful in her innocence. She has no degrees, no knowledge, no idea of what is going on... But she keeps fighting, showing more strenght than all of us united. She looks at everyone, and smiles a genuine smile. She is happy just with feeling the warmth of those who love her... with an empathy that is both defying and haunting. We love our DeeVa so much we would let her go if that is the best choice for her. We wont allow her suffering innecessarily. But right now, she is there... powerfully spinning her web so we do her will... Her mind ever present behind her lovely stargazing eyes.
Some attitudes are too much to handle. We are reaching our limits... Still, we try to breathe and let God take charge. What is best for DeeVa will come, as God wills it. I just wish that people didnt have to make things so difficult... I just wish dissapointment were not so continual... But the show goes on. Stronger than ever.
It may be about the bad, sometimes one has to talk about the bad... But we dont forget the good. The good is out there... helping us with prayers and good vibes... The good is lending a helping hand, to make a dream come true, to give a chance for truly living to a little star that just began to sparkle and fate treatens to take away. There is good. We have witnessed the good in our friends, in strangers, in everything that surrounds us. We have witnessed miracles, as swift as they may be... We are angry, we have a right to be angry... But that only fuels our dedication to our cause: Our DeeVa. It is her, not a choice to tract or not, that makes us face each day... We battle for her wellbeing, not for anyones ideas. Right now we strongly believe it is not the time for rushing into something that can have lifetime consequences. So we will do whatever is in our power to stick to this. We also believe that God allows things to happen because of a higher purpose. Something big will come out of this. Something good, that we still dont understand but that will be.
For now, we'll just loose ourselves in our DeeVa's eyes... in her smile... Together we shall stand after the storm is over. Together.