Children should come with manuals; especially the sick ones!

     So, I thought I was going to send the kids off to school and then hit the gym for a couple hours and head home to clean and then maybe read for awhile. Nope! My little one is home sick so I had to re focus my self and plan my day a little differently. I cleaned first and have spent most of the morning on the phone with doctors and her therapist and her school. What a challenge she is. I wish I had an owner's manual with this one!!! I am guessing a lot and hoping that I am making good choices.
     Tomorrow she is having a chest CT to look further at the nodules on her lungs and see if there is any relation to her intense and constant stomach pain. She's not happy about it because she has to get an IV but she'll be fine, she's a trooper! She always makes me proud. After all, she's been dealing with this stuff her whole life. Poor girl. I just got word that I have a 9:30 am meeting tomorrow with the school nurse, social worker and principal to come up with a plan to get her through the school year.
     It is very difficult as a parent to have a child or in my case, two children, with chronic illnesses. No one can tell you how to get through it. You just have to find your own way and sometimes that can be very challenging!!! I would love to help other parents navigate their way through the school systems, medical systems and even the legal systems as I have gained a lot of knowledge over the last ten years !!! I feel great when I can help others, even if it is something simple or small. My school district has never had a child with my daughter's diseases so I am doing a lot of educating and advocating!
     It's definitely made easier with a positive attitude and some confidence! I know that I am the authority on my children and I don't let others push me around when it comes to them. I will go to the ends of the earth for them, no matter what! They are my life. Please send some positive energy this way for my little girl !!! Peace and Love, Diane Marie