In loving memory of a 5 year old diva with Spinal Muscular Atrophy Type 1 who changed our lives forever
Thursday, February 21, 2008
The Waiting Game
Well, these are the news so far:
-Medical Insurance: Right now we are waitig on the Worldcare 2nd opinion to have a meeting with the med-insurance director so he tells us what they will do. The lady from Worldcare told us that it was very likely that Deedee will be taken to the US Mainland for care as her condition requires plenty of specific expertise... But the doctors will give their decision by Friday and then it will be taken to the med-insurance director for further action. We expect a yes for the hospitalization... But since nothing is certain...
-Cathastrophic Funds: We filled up all the paperwork and it is all ready. If the medical insurance says no, they will pay the air ambulance to New Jersey. Since all this time the ICU doctor and the social worker has been telling us to be there, we will be there. We will feel like the fishies at the end of Finding Nemo when we arrive and say "Now what?". But, we will get there. It seems it is what must be after all.
Here in the island things are a bit unnerving in terms of medical care for kids that depend on ventilation and other mechanical ways for survival. The laws that are suppossed to be there to help them are somehow twisted to the convenience of the big companies... Parents and doctors go unheard, and kids keep dying because the system is blind to their needs.
What we have found out during this whole experience is that people who are in power in the right place to help just won't because of political affiliations and convenience. It is sad... The rotten apples get their way and they are a few bunch, not a whole... The rest of the apples in the sack don't really know what to do or how to change things... The few that try to raise their voice get thrown away from the sack. Sad indeed.
Another thing we have learned is that when people unite for a cause, prayers work miracles. Just when we were beginning to loose hope, things began to happen. People that barely knows us has been moving their people to help us. People from all over the island have been granting selfless support to us. People from our workplaces have been very generous and kind. Strangers united to pray for our DeeVa's health, moved by her early age, moved by personal experiences (we have met a few that have lost babies to different diseases). People from different religions have joined the cause, sending out prayers that gives us strenght to go on. It all has been very surprising, very unexpected. And we have been humbled, as well as we are very grateful to all.
We are tired and drained, but we keep going... We KNOW we must keep going. It is all in God's hands, so He guides our path... Wherever that may lead. He blessed us with our little miracle, and He smiles each time we are together... True Love endures anything and everything. Deedee gives unstringed love to all who surround her, a big lesson to be learned from one so young. She smiles openly, welcoming everyone with her warmth and will to live. She is breathtaking.
Slowly, but certainly... The top of the mountain is near... We know it. But now, lets rest and play the waiting game... Just for one day...
10-4
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment