We got the apartmet, we got University Hospital of Newark saying yes to our DeeVa, and today when we contacted Catastrophic Funds to coordinate the air ambulance, they say that the case was submitted to their comittee and was denied because there was no hospital accepting Deedee and now it must be re-submitted to the comittee next Wednesday to see what they decide. ??!!
We dont get it. They had told us, back on February 19th, that the only thing they could give us was the air ambulance one way ticket as they could not cover anything else for our case. That was enough for us. We believed their word that they would do the transfer. Now, this... Aparently someone didnt really thought we would get a hospital without having insurance, and just dismissed us with a word of hope that would take us nowhere anyway... I would like to think that is not the case. Seems Mark and me have the same bad habit of believing people. We are too naive, still at this stage of the game.
So... Now what? We have to wait for our hospital to try to move things, or until next Monday to speak with the Catastrophic Funds director who is not available this week, and/or wait until next week's Wednesday so the comittee gives its veredict of granting the air ambulance... or not.
After all this work, after all this wait, this happens. It was the first stepping stone we needed to do before everything else, and we trusted their word about the air ambulance... It is all a bad cruel joke.
DeeVa has been 3 months with 2 days at intensive care. She has been intubated all this while, which is NOT good. Days cannot keep passing by... People dont seem to get that if she's at intensive care it means she has a life or death situation. Her illness is fatal and must be assessed inmediately to at least try and grant some hope for her. SMA has no cure, we know. It can only be treated... And we want to treat it so Deedee has the best options at her grasp within her particular circunstances. We want her to have a future, even if it seems to be just a fantasy or an ideal. We will not treat her as if she had a death sentence because from the moment we are born we are all going to die. It is that simple. Only God knows when she will go to Him. In the meanwhile, it is up to us to make things happen for her, so she truly has a chance.
It is frustrating how people dismiss things as if they were everyday situations, as if what we want was only a product of fickleness. We wonder what they would do if it were their children who needed the help... The help that a government agency made just for that can give. We hope that it all will work out in the end, that this is just one more trial of our patience... May God grant wisdom to the right people, enlightening and unhardening their hearts. And may God give us strenght and serenity for the days to come...
In the meanwhile, baby waits for whatever is gonna happen to her... Always smiling with innocent glee, always alert to everything and everyone, always eager to simply live. What a lesson to learn from one so small!