So, today was Holly's 504 enrollment meeting where there's a social working from our clinic, the school nurse & pretty much everyone that has anything to do with Holly's schooling meets to make a "plan" for next year. I hate these things because they just force you to hear things you don't really want to hear. As a parent no one wants to hear how your child has failed, not because they are incapable because they have a medical problem that holds them back.
As I sat there & listened to the goals from the school point of view about her education just to hear the clinic social worker fire back with, lets not get too ahead of ourselves, you never know what could happen in the next few months I was almost in tears. In one way I know where her teachers are coming from, they want to set goals that give her something to work towards but on the other hand I understand the social worker, they want to make sure the goals aren't too far out of reach & that we have a backup plan. I really couldn't respond in a professional manner because it's really hard to sit there & come to the realization that your child just failed Kindergarten because she missed so many days, it kinda makes you feel like you failed as a mother.
I just want whats best for my princess. I will do anything to help her succeed but there comes a point where it's all too much. I just want her to live her life & be happy. Living with this uncertain chaos is enough to drive a person insane. I have learned to just live & do what I think is right, it doesn't matter what anyone else thinks of how I raise my child or how they behave or what they think I should do or what goals they think she shoudl have because I am her mother & there isn't another soul in my immediate surrounding that could possibly understand what it's like to sit through a meeting like this & keep yourself together. Everyone can feel pain in their hearts for Holly but I don't know many who can feel the pain a mother feels listening to others decide thier childs future.
I don't want anyone to take this the wrong way, I know my family & my friends love Holly but it's still not the same feeling you get when it's about your child. I guess I just came to the realization today that no matter how hard I fight for her it's just not enough & it never will be. I will never be able to help her the way a mother should be able to help her. I have been left hopeless. I guess it doesn't help that this is genetic, so not only can't i help her...i caused it.

Medically wise I want everyone to know that Holly did really well at her clinic visit last week. Her FEV1 was 89% which is really good for her. The lungs looked really good & there wasn't a present infection that showed up, I have recieved the sputum culture results back & they were all NEGATIVE so yeah for that, I was so super excited about it!!! They did however stick the tube thing down her nose while she was awake & she wasn't a happy camper about that....here's to growing up & going without sedation & just mild numbing meds !!!!!