Letting go and forgiveness

Its so easy for an outsider to judge, make a blanket statement, and give well meaning advice. I know it is not meant to be malicious or hurtful but some things sting none the less. As positive as I try to be, I also have to be realistic.  Having unrealistic ideas and expectations will only lead to disappointment and heartache for all involved. 

First of all the reality of schizencephaly and polymicrogyria is not always a good one. The fact that Jaylyn has both of these rare brain anomalies leaves me with so many questions and worries.  There is very little research but I have read every single scholarly article and medical journal entry that I could find on both. I have joined support groups for both. I have spoke with parents of other children of both and a few that have both just like Jaylyn.  I have educated myself more than most of the specialists Jaylyn has seen. Although Jaylyn is not presenting as the text book definition of either, and is making some promising progress she will not "get better". Her brain is severely malformed and nothing will change that. When we first got the news, the neurologist went through the MRI results slide by slide, explaining the images and the parts of her brain that were effected and what we can and cannot expect. 
What I was least prepared for is the blame. I blamed myself. I blamed environmental exposures, I blamed inept care, I blamed anything and everything.  I am so full of anger, hurt and confusion.  Since Jaylyn's 1st birthday is fast approaching, its time for me to let go of those emotions, and stop blaming myself. 

Theres no text book on parenting thats for damn sure but at least you have friends, family and Google to provide all the advice one would ever need. But special needs parenting? Someone that could relate to your specific situation?!? The chances of that are few and far between. I belong to 12 online support groups for the various diagnoses Jaylyn has. Some groups are for networking and others are for adaptive equipment ideas etc. Including the one I created and maintain myself in hopes of raising awareness.  Awareness for 3 extremely rare diseases that even in my 15 years as a special needs pediatric nurse had never heard of. And believe me, I have worked in places where you would think you had seen and heard of it all!  So what makes an outsider or a doctor whos only seen my child a few times such an expert on my child?  What makes them such an expert on me? Who are they to tell me to cheer up and stay positive?  Do I not have the right to grieve for the child we were expecting and planning for? Do I not have the right to cry when I want to cry?  This by no means makes me a negative person.  It makes me real. I look forward to the positives in my life. My children are my everything.  They are my heart and soul. They are the 1 thing I know I did right! And I can say this with pride and without reservation because I get compliments on their manners and behavior all the time.