Guilt, heartache and pain

I'm not an open person. I hold my emotions in and try to keep a smile on my face. So sharing this isn't easy for me. For years and years I've seen people having babies. It hurt so bad to know that I would never have a child of my own. Yes we tried adoption, but that's just not the same. I wouldn't feel my child kicking in my belly, I wouldn't experience all the emotions of pregnancy, I wouldn't give birth to my child. I was happy for all my friends and family that had children, but it killed me. Honestly, it still hurts some. Even though we miraculously got pregnant, it took 12 years and tons of heartache and pain to get there. 

Every time I look at Amelia I hurt. I feel so guilty for what happened. It was my job to protect her and keep her safe and healthy and I failed. You can tell me till you are blue in the face that it wasn't my fault, but it will not erase the guilt and pain I feel. I used to sit in her room while pregnant and wonder what she would be like. I would smile thinking about how I would see so many firsts in that room. Her rolling over for the first time, crawling, sitting, her first steps. Now I can't be in there without some sort of distraction without breaking down. Putting her to bed is the worse. Sitting in there, holding her, I just feel so horrible for everything she has been through and everything that she will go through. Watching her struggle with things that should be easy hurts. Thinking about things she may never be able to do kills me. She gets so frustrated not being able to be mobile and it's hard to watch. 

One thing that makes me feel even worse is the pain in Matt. Seeing other babies do things that we don't even know if Amelia will do hurts. What makes me hurt more than ever is the pain in Matt as he says "did you see x doing y? It sucks doesn't it?" I feel like not only did I let Amelia down, but I've let Matt down too. 

 It's also hurtful when people tell us that Amelia is fine or she will do x, y and z. Yes besides her head, she looks "normal" but most of her issues are neurological. Her brain does not tell her body what to do, so she's not even close to crawling. She has cerebral palsy so she is weak on the left side and unable to do things. Despite working with her for a few hours a day and taking her for therapy a few times a week she is still way behind and may never get to where she should be. I have to deal with the heartache of watching her try so hard for something she just can't do. 

 Every step she moves forward she has another surgery that sets her back two steps. She's starting to make gains with her torticollis and then she had a blocked catheter that made her head bigger and weighed it down. She's starting to show some strength in her spine and in a month she will be in a spica cast so most likely after the 3-4 months she will lose the strength in it. 

 Maybe I'm still hormonal. Maybe it's all the stress in our life. Maybe I'm just weak. I try to keep myself busy (in the rare times we are home and Amelia is sleeping) so I don't think too much. I can't stand feeling like this. I can't stand the tears and pain. I will say that seeing this precious little girl smile and hearing her laugh melts my heart. Knowing that all the hurt I have for her she isn't carrying. I love this little angel so much.