This is Raygen's new shirt. What do you think? I think it fit the mood we were in yesterday. Can you think of how frustrating it would be not to be able to communicate? I know it would make me have melt downs at times. I know it is a huge reason why Raygen has meltdowns. I know that it is hard for others to work with Raygen because she is so strong willed, but that is one of the reason she is here today, her will. Rayen has had to fight for every single breathe she has taken since birth. I think that allows her to be a little difficult. I think her PT wanted to drop us yesterday. It makes me sad because she is the first therapist I feel like I really like and that can and has made a huge difference in Raygen's development. Raygen is very much like "Rain Man." She gets something in her head that she likes and doesn't like and she sticks with it. She can not communicate with us by using sign language yet or pictures, she uses crying. It can be very frustrating for anyone, sometimes even myself, but Raygen does communicate in her own way. Raygen points to things, brings you things that she wants, and will lead you to things. I feel these are HUGE in our world. Six months ago Raygen could not communicate at all. Since I am with Raygen 24/7 I can usually tell you what she wants, when she want its and so we have our system, but that doesn't work for everyone.
Yesterday at PT Raygen wanted to play with a certain ball that she has played with the last two times she was there. Raygen went directly to where the ball should have been and she was very upset when it wasn't there. After that PT went down hill. Raygen was very crabby and she didn't really want to do anything. I understood why the ball wasn't there, they wanted Raygen to focus on other things, but I also understood why Raygen was so upset. Do you know that the doctors told us not to let Raygen get too upset during the first few months of her life? So from birth till her second surgery Raygen never really got too upset. We tried to make her happy before she felt the need to be upset. Raygen lived with 75% oxygen saturation's so even crying a little she would turn purple. Seeing your baby purple is pretty scary. So I know that is part of the reason why Raygen gets so upset now, she isn't used to us telling her "no" or not "keeping" her happy. I just feel sometimes that people don't realize how far Raygen has come. Yes, she still has a way to go to get caught up, but I know she will get there in her own time. I just feel sad, when people give up. Raygen doesn't give up and you can be sure I will never give up on Raygen. If her PT does drop us I guess I will have to find another one or do it myself. I have learned through all this that Raygen's HLHS is scary for most people, including doctors. I understand when things are "too much" for PT's and doctors and they feel overwhelmed, but I've never asked them to "fix" her just "help" her. I know Raygen is absolutely amazing and if people choose not to help us or help my daughter then that is their loss.
I would rather my girls stand up for what they want then sit back and take what handed to them.