This morning I woke up and my devotion was on Deuteronomy 31 6! How perfect since we are always living in fear of bad health, not being able to provide for Jose and worst of all that his sister will not remember him! Although Jose loves us there is no one he loves more than Gianna! She is not yet two and she already understands that she has to reach up to him and she also knows how to help him when he can not sit himself up!
There is a fine line separating Jose from professionals who know about Duchenne and the medicines he needs to give him a better life quality! This line also separates him from knowing his aunts and grandparents in te USA. From playing with his crazy cousins who would love him! We took him here to this line so he could see the ocean and tried to get his dad to swim across but no go. We just wanted to see what would the immigration man do sitting in his car on the other side. This line separates people who were brought over and raised as americans all their lives and even have kids and families just an hour away. But most of all it separates my son from a better life. I would love to adopt Jose and get him to Children's hospital! However that cost starts at over $5000! And that does not mean the USA would say yes!
Our town flooded in January and God has been doing some amazing things through that however it has also left a land very bumpy and hard for Jose to get around. His body strength pretty much does not exist so please pray we can get our land level soon and that the winds will calm and he can go outside more. He loves to play football and chase with his friends but when he had his heart attack the doctor said no activities!
Jose new pet! No just kidding it is dead now! On our first night in TJ I was feeding Gianna around 230 am and I felt something crawling on me when I grabbed it, it grabbed me back! As I realized it was not a spider I threw it across the room hitting the wall and waking us all up. We played hide and seek and God finally put him on the floor in front of us! This is a small reminder that Luke 10 19 is true! It is also a reminder that the enemy is always looking to get us! Gianna and I finally fell asleep at 5am and had to wake up at 6am to get Jose to CRIT! The boys had no trouble falling asleep again!
Our day was filled with specialists visits. Each asking why Jose wears a face mask and why he does not do more things like school or go to therapies near home! There was a social and financial meeting a psych and a pediatric panel of doctors.
Although we left feeling a little discouraged we were also encouraged that two of the doctors seemed to know Duchenne! One saying he needs a new wheelchair now! The other saying he needs Heart and lung specialists! Yes and when we told them what kind of insurance we had they all frowned! Yes but God will provide we tell them and they looked at us the same the lady in the financial meeting looked at us when she says your income is less than your outcome! YES we responded but how! GOD!
We told her our lodging was paid for by a birthday gift for Jose and it even came with amazing food! And our gas and other expenses a friend deposited cash into our bank!
They want us to go up a few times a month but we also explained to them that Jose body can not take up to 14 hours in a car round trip and it is expensive. We will get the exams they want from the specialists and see what therapies he can do. However we also explained to them as much as we would love to live in TJ so he could be there weekly, he can not live without his family. His gramma and aunt were his mom for 11 years and his cousins his siblings. They seem to understand. It is hard to say to each doctor in front of your son that his life is too short and that the choices you make need to be in reason for him to enjoy his last days. One doctor got the learning disability problem but the others did not.
Somedays God wakes me with a heavy heart for what my son has to hear during this time but then I am reminded that He will call Jose home one day healed and pain free.