It’s been three days since we were given the Clinical diagnosis of Noonan’s syndrome. Three days and it feels like a life time. I feel like I’ve read every site out there on the syndrome…and it’s surprised me how few they are. When we thought it was Williams syndrome, which is rarer, there seemed to be more. No-one has heard of Noonans in our friends and family. Hell I hadn’t and I work with children so I come across many conditions.
I feel so…I don’t know. Lucky that she doesn’t have the terrible heart problems others have faced, worried that maybe she does and we don’t know (we won’t know until the heart scan comes through). I keep searching, reading as though someone has an answer out there to tell me she’s going to be okay. That she will grow up and live a normal and independent adult life. That she won’t get picked on in school. That she will have friends and a relationship and…all those things we take for granted. But no-one can tell me those things. Perhaps she will, perhaps she won’t. I hate that uncertainty. I think all parents would rather take anything on themselves than have their children go through it. I wish I could take it away. But wishes don’t make reality.
I don’t need her to be a doctor or a brain surgeon or a rocket scientist. I don’t care what she does…I want her to be happy. I want to shield her from people who WILL be cruel because she is different. I want to save her from being upset because people teased her. I want her to have friends. And I’ll do everything I can to help her. It just hurts knowing it won’t be easy for her.