We met with Dr. Holtzman yesterday. He is the mitochondrial/neurologist that we were going to visit before we moved out here. He was an excellent doctor, and was probably the first doctor to sit down and explain everything to me. He explained that John is obviously unique. He doesn't really fit into a "category" which is really just a label. He is special needs, and will need therapies and special schooling to help him with his needs. The only "fix" for him would be all of this. So basically putting everything from all our other appointments together, and explaining it to me. John is going to be a lot of work in life. He made me cry by talking to me about how to care for a special needs child, which meant I have to take better care of myself. Special needs children are a "burden" on people! Which I totally agree with although it is a burden that I wouldn't want to live without. So it is time to accept that my son is "special needs" with no exact label, he will need the best therapists, and special ed schools that are available for him. Which is why we moved to Boston. I feel lucky to have John in my life. There are people that can't even have children, or people that have special needs children that are very difficult. John may be special needs, but he is so sweet, and easy, and he has a lot of potential. So it is now time to accept this, and move forward. When John turns three he will be able to go to a school that will best fit his needs. This will be helpful to me because he will receive all his therapies there, and they focus on everything that I have been focusing on.
The one good thing is that the Dr. doesn't think John has mitochondrial disease! I am very relieved to hear this as I spent many nights unable to sleep because of this disease. I did learn so much about it, and hope that everyone will remember that there are a lot of children that are suffering from this horrible disease, and just because John does not have it we still need to know about it. They really lack funding and education for this disease, and I hope that if anyone was looking for somewhere to donate money they would consider mitoaction.org.
I have decided to go back to work waiting tables. I have a couple of interviews set up for tomorrow. We are so broke, that it is the best way for me to be at home with the kids during the day, and make some extra money. Eventually I hope to go back to social work, but it would not allow me to spend the time I need with my children, especially John. Working nights would also allow Johnny to focus on getting his realestate business going. The market is doing okay out here.