Where my head is at....

  I can't stop thinking about Fenn's future, what's in it, is he done with surgeries and complications? There is no way of knowing, when people ask me, and they do often when they hear about his journey I really don't know the answer and that scares me.

  I am part of a 'support' group on facebook for cranio moms, I say 'support' group because really I think the group just makes me more nervous for the future than anything, it isn't really comforting me at all. There are so many moms on there whose kids 2-3-4- years later going back for surgeries when they thought they were finished with Cranio. When I look up photos of cranio children years post op I can still see there is something wrong with them. I can see that their heads still don't look normal and wonder how their families can't see that. Truth is I won't notice either and I doubt I have any friends or family who are going to tell me Fenn doesn't look normal. When I look at photos of him pre op I can see how odd shaped and abnormal his head was but back then I only thought there was something slightly off about the shape. Nope, it was really off, out of the situation I can see that. Maybe it's the same now, I can feel his head has a lot of bumps and ridges but I think with his hair in it's not very noticeable anymore, maybe it is?

  I don't want him to struggle in school because he looks different. If my friends and family aren't telling me you can be sure his classmates will tell him so I really hope he does look normal. Also now a mom has been posting results of a case study of a lot of cranio kids and how they are struggling in school. I feel like maybe this nightmare will never end and I will always have to remember what Fenn has gone through. He may have to go through much more and I don't like that idea at all.
 I can't believe we are still waiting for a MRI at IWK. We have been waiting since last summer. I have no way of knowing if the episodes he has been having are related to his Cranio or not. I'm just so over having to think about this, can't wait for our SickKids appt in May so I can find out if everything is ok. Feel free to give me an honest opinion on whether or not he looks normal with his head shape because I really think I can't tell. I don't think I've seen one photo of anyone else;s cranio kid that looks normal to me.