Craniosynostosis? What? I can't even say it!: Am I still bitter???????

I ran into someone down the street today and we were chatting about how Denver was going, so i told them and they said you look better you don't look so drawn as you did before and I went on and said, I don't think I am bitter about it any more, I think I have lost alot of that bitterness. Now that I am home I have been thinking about what i said and why i would say that. Yeah I don't feel as bitter but I still feel alot of not great things about this journey with cranio. I am still so so angry about so many things, I am still so sad about many things and I am still mentally and emotionally exhausted, I hate many things about this there are very few things i like probably the only hing good to come of this is that i have meet many other wonderful parents who are going through the same things as me, while I wish that none of us were going through this I am glad we are in it together.

I used to be strong but I now spend more time feeling weak than strong. I feel like alot of the joy has been sucked out. I used to have a strong brave non fear full trusting son, now I don't. Yesterday as we are walking into the hospital for his eye test he says to me I wonder what they will do to me today mum? the fear in his voice and then to drag him in knowing that you will have to hold him down kicking, screaming and crying does nothing to relieve my guilt at having to do that.

I used to trust the medical profession now I don't. They did not trust me when I told them repeatably that there was some thing just not right with my sons head. They want and expect me to trust them without question but I do not get the same in return. We have our 6 week post op visit tomorrow with the surgeon and I am more scarred than anything, I don't trust him to tell me the whole truth, I don't trust that he will touch and talk to my son and me with respect, I don't trust that he will hear me not just listen but actually hear me, I don't trust that he will answer my question's in full, I don't trust him to believe me , I just don't trust you because you never once trusted me as a mother not over reacting but as a mother with a gut instinct that some thing wasn't right.
I used to know every inch of my son but now it changes every day and not in a good way. I hate that I can feel more new screws as the swelling goes down, I hate that he looks different, I hate that it's not him any more, I hate that now we look at his head for problems, changes, marks and not as a product of beauty but now as a product of a medical world.
There is joy gone because of this cranio we no longer have the care free ness that we used too. Our conversations have changed, our worries have changes our lives have changed.
It is a struggle in more ways then one it is eating at our heart and soul.
I used to be able to look at kids and babies with pure joy and wonder, the favorite part of a new born to me has always been the back of there head but now I am scanning kids and babies for the shape of their head, is it OK, is i the 'normal' shape, is it even. I want my joy back, I want to look and not wonder if their head is OK. Would a mum want me to tell them if i thought some thing was not right? I don't know, but if I can spare some one else the pain of a late diagnoses is it worth it?
I have lost trust in people throughout this. People you thought would step up to the plate and help and said they would haven't but then I am doubly blessed when some one unexpected steps up and helps, they don't have to be asked they don't have to be lead through it inch by inch they are not in it for themselves they sincerely want ti help. I have learnt that some people aren't that concerned with how Denver is they just want to know so that they can talk about it at the next gossip sess with their friends they may offer to help but never actually do, even if you ask. But I am now seeing the true beauty in others and that is a blessing and I love them for that.
One other good thing is that I am loving my new hair cut and have now been joined by my identical twin 7 yrs olds who are also loving the new hair do.
I have found some strength deep within my self that i didn't know was there i am finding ways of how to reach it when i need to but it's not easy.
I think I still sound bitter and here i was thinking I wasn't, may be it's just because I am so disappointed with yesterdays result. Denver's back of his eyes (were they check for pressure) is still the same, they called it stable, but I don't want stable I want some thing else, not the same.
I want a glimmer of light and hope. I want my old life back with you craniosynostosis.