I haven't talked much about Rachel and her Cerebral Palsy in a while. I guess I just didn't know what in the world to talk about. I have been pretty confused about this diagnoses really means in everyday life. She does so well and she is so determined, I didn't get how she was getting affected if that makes sense.
So today I sat and worked alone with the Occupational Therapist she really put together for me how her CP is going to affect her. She explained to me that babies learn processes like walking and talking just like we learn to drive. At first it is very difficult and causes you to really focus on every action you make but in time you just get it and the process becomes sub-concious.
Well the problem for Rachel is that her body and brain don't communicate and these sub-concious processes are much more difficult to make. So when she is doing various different tasks it causes her whole mind to concentrate on that task (lets say walking up a hill) she can't focus on something else (like looking out for obstacles). Also if she loses focus for just a second she will just fall (like today she was sitting on a rocking chair and she saw Cally grab a toy and she slipped off the rocker). Finally she has difficulty figuring out how to do things that come naturally for other kids (like sitting on a chair properly). This need for constant concentration is why her face is often frozen in odd shapes. She is trying to express herself but she doesn't know how.
With this said I'm understanding now why the specialists say that if Rachel were not so hardworking and determined to over-come these issues she would not be doing well at all. It is b/c she is so amazing and determined that she has trained herself into overcoming obstacles and learning these processes. This is why if you meet her you might not understand there was anything off. It gives me complete full hope that anything practically that she wants to do in life she will make sure she achieves it!
So now I understand the long term prognosis and why the specialists all tell me that this will be a life time fight. From the day she was born learning things that should have been automatic has been a fight: i.e. learning to breathe, roll over, etc. have been challenging for her to learn. This means kicking a ball, learning to type, getting a license, etc. will all be major fights (and realistically some things may be beyond her control). It won't go away BUT now I know that as long as she is trying she can learn. On the other hand things like her low muscle tone in her trunk and her high tone in her legs can be improved upon in time and with therapy and hopefully won't carry any serious long term consequences.
We are blessed that this is not worse. Most afflicted with CP don't have such a great outlook! Nevertheless it is sad that everything is so hard for her. We all have to remember that while everything will be more challenging Rachel will do amazing things and this condition will not stop her.