Thursday, July 7, 2011

Finally something to say..

I have been a little out of the blogging world lately. I come and read all my favorite blogs but when I see my blog on my dashboard. I just dont know what to talk about. James is doing well over all. I find it difficult to talk about my worries about James' progress. I am so very proud of him and all that he has accomplished but he does have such a very long way to go, and my fears that he will never meet the goals we dream for him start to creep in. That is pretty much where I am right now. It sort of feels like a holding pattern.

We took a break from formal in office PT. I just needed to feel like he was getting to be a "normal" kid. But I am learning that what I grew up thinking is normal, just isnt the normal that I am going to get to have in my life. God just has other plans for us. I cant lie and say that I am happy about that. I sometimes spend my quite times with God crying and screaming to the heavens my fears and whys. I feel so blessed that James is even with us here on earth when we were told that would happen, but I still grieve what I thought his life would be. I wonder if that will ever pass? Will I ever have a peace about James' Cerebral Palsy? I dont know but everyday I wake up I pray to God that he grants me peace for today.

I am so grateful for the friends in my life. They are always to sweet a willing to make sure activities that James is invited to he will be able to participate. I know that at times they just wish everything wasn't such a big production when we are involved. I do too, trust me. I hate having to say no to activities, but I have learned what I can handle and what I just cant.

James is having a few growing pains right now. His hamstrings and heel cords are just way too tight. It is causing him pain and causing him to act out in his behavior as well. As a parent it is difficult to discipline for behavior problems when I know that my child is in pain. I am grumpy when I am in pain too, but where is the line. Where do I stop making excuses for the behavior and just deal with it? This is the on going conversation in out household right now.  I am torn between knowing how I WANT to discipline but feeling like I cant because like everything else we have to tweak our want- tos in our life. Dont get me wrong James is a joy to be around. He is loving and friendly but when it is bad it is pretty bad.  And I am loosing the support that I used to have. In public I feel every eye on me, when I am seen correcting my "disabled" child. I ever have people scoff at me. And lately even at extended families homes we deal with questioning of our discipline plan. It is just difficult to do what we know is best because we live with it everyday and feel like we have to explain our choices to everyone.

But, life isnt all worries. James has been talking up a storm lately. He is always saying the FUNNIEST things. He wants us to read everything he sees to him. I love how inquisitive he is about the world around him. His favorite show right now is WIPEOUT or as he calls it "The fall down show" He loves for all three of us to sit on the couch and for him  to bounce back and forth between us as his daddy and I make fall down sounds. I took him down to Birmingham for a follow up PT visit and his PT thought that he was doing great. She said that he seemed stronger and she felt he would do wonderful this school year. We do have some very big decisions to make regarding his heel cords and how tight they are. Looks like he is due for yet another surgery. But that will be another post for another day. Here are some of his latest pictures