Random blogging of Thoughts...

So blog it's me again. I am going to be babbling on...again. Things have been hit or miss lately with my mood. I go from being a-okay with everything, than I get hit with a wave of anxiety/depression/fear. I don't know if this is normal or totally uncalled for. I don't know if I am thinking too much about this (probably...I always do). It would be so much easier if I had people to talk to about this new diagnosis. Nobody knows what this means. Nobody can give me any sort of prediction because the data is ever changing. There are no families I know that have dealt with this diagnosis. The only thing I can do is read, and read, and read some more about different research articles that contradict each other. About different blog sites that freak me out, or offer me solace knowing I am not alone. There is a message board that I can participate in - but they have been down due to Hurricane Sandy. I have been waiting since we got the diagnosis to be able to log in, but I have been awaiting approval. I asked to participate in the Parent to Parent Support program through CMH, but there are no registered parents with this same diagnosis, so they have to do a national search. My pediatrician has never heard of it - and granted she is pretty remarkable and will catch anything I should be concerned about. She told me when I informed her that if we ever need to make any type of referral she will sign it no problem. She knows what FirstSteps has found (her upper torso weakness, her language delays, some social concerns), and she is all for doing what we need to. But I feel like a lot of it is going to be dependant on our eyes and ears, our knowledge, to guide her cares and know when to be concerned. And that is the scariest feeling in the world. What if I miss an article and it shows that there is something that pops up, and I don't catch it? I know she will be looked at by many medical professionals, and I shouldn't be that worried, but I am still fearful. We have all the right programs instituted for her - she has been in the therapies she needs, and we are working on her developmental evaluation referral. We have many specialists already involved from prior to this diagnosis. I am debating trying to get in contact with Cleveland Clinic - I think I will wait and see if Sam get's a positive test result. If he does, we might look into a family trip out that way just so we get all the knowledgeable people giving us as much information as we need. And to top it off, we now have to go to a cardiologist for Izzy - the doctor heard a murmur at her check up. She thinks it is an innocent murmur, but didn't want to miss something due to all the other things going on. So now I have her to worry about. It wouldn't be so bad if I had time to process. But I feel okay about everything when I am with my kids, until I go back to work and am immersed in families who have all these terrible things happening to their children. And I can't help but personalize. I wish I could talk to others and they would understand my fears, anxieties, or thoughts. I wish I could stop feeling like these thoughts are me being crazy. I wish I knew if the worries were warranted, if others with this diagnosis were feeling the same thing. Or is it like most everything else with me - I am over thinking.