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Since I could not get my insurance company to cover my visit to the Mayo Clinic after 6 months and a referral from the head Neurologist at Ochsner and after being told by my very own patient advocate within my insurance that I need to quit trying to chase a diagnosis, which is not at all what I was doing. I have a diagnosis and if she was in my shoes and understood my diagnosis she would know full well what I am so desperately chasing is a way to keep my body from shutting down any more organs because that is what my autoimmune autonomic dysfunction does. It has systematically shut down my appendix by the time I was 12, my gall bladder by the time I was 30, my stomach, and now my intestines. The next organs are necessary for life including my liver, pancreas, and my heart. I have no idea of a timeline or which organ will be attacked next but I am trying to do everything in my power to avoid a multi-visceral transplant or worse, loss of life. I was listening to the Joshua Kaddison song, "All He Wants is Mama's Arms" and it broke my heart because that is all my sweet Elijah wants. When I am not in so much pain we snuggle when we can but from the moment he was born that was all he ever wanted.  He peed all over the doctor and nurses and as soon as they put him in my arms he stopped crying. The last day I was in the hospital I fed him and decided the nurses in the nursery knew what they were doing and I sent him down so I could take a nap because once I got home I knew that wouldn't be an option. As soon as I put him in that little bed he started crying, but I let him go anyway. Within 10 minutes they called down to my room and told me he must still be hungry and when they brought him back, the minute he was in my arms he stopped crying. For the next 6 months, I didn't even turn the tv on. I would just hold him and look at him and to this day all he wants is mama's arms. I want nothing more than to be there for my children, to be the mom I was and that they all miss so much. According to them I was the best mom in the world and that was always the only opinion that mattered. I have been put down and ridiculed for my parenting style by my own mom and grandmother. When I homeschooled my older ones I was told, "Well, they will only be a year behind in school." When in fact, they were 3 years ahead when they went back to school. 

Getting back to the subject at hand since I know there is no one willing to help me get the care I need and I know there are so many senseless deaths because when someone is so ill they cannot fight for the care they need I want to start a foundation that advocates for patient rights to the care they need. I will set up a first fundraiser and prayer vigil for all of my friends, family, and all who want to attend to come and pray and see first hand the power of God's healing hand. He will be my Jehovah Rapha, the Lord who heals; and my Jehovah Jireh, the Lord who provides; my Adonai, Lord my Master; and most of all my Agape, love without condition. He can be all this and so much more to you. I miss being a children's minister. I miss all the church families I have had the honor to know through the years. I haven't been to church in a while because the last time I went, my pain hit me so hard that I could not stand and did not think I would be able to walk out of the building. We have our devotions, watch Church on TV, blast praise music often, and spend much time in prayer. Noah and Hope found a church in Bastrop that loves our family and has even raised more money for us than my home church. Noah is in the band and often leads and teaches. I miss my church family. The last time I volunteered, I could not be there all the time and that was the first time I had ever volunteered to do something and did not follow through. I have had to learn my limits and I rarely leave the house these days. I have to plan my daughters sweet 16 in October and if it is in God's will, I want to be healed by then. That is why I want to plan for my birthday to be the first fundraiser for my foundation and the Prayer session for my healing. I will need help because of my limitations, but I believe because of my limitations God can use me more than He ever has in my life, and He has used me greatly.