We would like to Thank everyone for all of the support received on Daphne’s Diagnosis.
I keep hearing “I don’t know how you do it” and “You are so strong.”
I honestly don’t know how to say we are doing it other than taking each day at a time, looking for anything positive, hoping for the mildest case, advancing science and a Miracle.
I still can’t explain the feeling I have with her diagnosis. I feel a little at ease I think because we are not exhausting ourselves searching and looking at her for any little sign or change to point towards something, anything. Call me crazy but in the back of my head I still have this little push that maybe they are wrong and it could be something else and to not close the door and just sit down and take it as is.
Now I think I am looking at anything positive she does and saying “hey this is what normal babies do.” We are learning to help her excel and grow in areas she can control.
If you see Daphne, besides her hands and arms when she is excited, she has a normal appearance.
Rich and I have a divide and conquuer method for helping Daphne, based on what we each do best. Rich the research and science and me the reaching out to families and groups.
I am trying to reach out to other parents who have kids with mito, a pediatrician that knows mito since they care most about the well-being of the child and having knowledge on the disease is huge and I am sure more helpful than the specialist who is very by the book scientific not warm and fuzzy.
A mito mom shared a method with me that I think is very interesting and I think will work, I am looking into a local person and will keep you all updated on the process: http://www.anatbanielmethod.com/children/children-with-special-needs