Parenting: Hang in, Hold on, Hug Tight


The words above are placed on a picture that we hang in our kitchen. I think we received it during one of the twins baby showers. I just thought it was cute at the time and didn't think too much about it until after everything that has happened to Audrey. We have been on such a roller coaster ride with Audrey that Shannon and I ask God, "why me and why Audrey?" I really don't know the answer, but why not us? We always thought this was a situation that happens to someone else and not you. You would kindly spend a brief moment emphathzing with that family or say a small prayer and then go about your day. Unfortunately, we're that family now and we must move forward no matter what happens.
I consider myself to be an extremely positive and optimistic person, but I have to tell you it's hard sometimes especially during days like today. Audrey is having seizures now more frequently, and they're trying to get them under control. However, the pneumonia is getting better. I was extremely frustrated the last couple of days because the hospital was not keeping us informed very well. I felt that we were in a stall pattern with very little information being passed. I think I have effectively fixed that now and feel fine with the plan of care. You will always be your child'd best advocate, and you should never put blind faith in a system like healthcare for your child. I feel confident that we have come to an understanding now.
Being a parent of a special needs child is probably the most difficult thing we have experienced. Recently, we met a parent of a special needs child. She was very nice and infomative, and she greeted us by stating, "welcome to the club". You know, I really don't want to be in this club. Nobody asked us if we wanted to join, and the membership dues suck. I'm rambling now, but if you haven't figured it out yet this blog is my therapy. Keep the prayers for Audrey coming, she's a fighter.



JB