fighting as hard as I can

     So, I'm really getting tired of hearing how Damien shouldn't be exposed to all of this medical stuff such as seeing the IV lines and poles and everything else let us not forget visiting mommy at the hospital. Mind you a lot of this criticism is coming form his grandparents who have no idea or willingness to understand the severity of our situation. Josh and I have help only from people who aren't even our family and it looks like we might have to move to Nebraska or Indiana if the transplant gets approved because we can't afford both houses and we certainly have no help when it comes to family. I know that is my fault, I ran my mouth in the first trimester of my pregnancy and said things I never should have said and honestly I didn't even know it was hormonal at that point. I've always felt like some sort of  black sheep, like they look at me like I'm some kind of freak and it hurts my feelings. To be honest, I want nothing more than to be accepted and I don't think I ever will be. 

     My son is exposed to all this medical stuff and has been since the day he was born and doesn't know any different. I feel like in some way he is learning compassion, he will play with a kid with a feeding tube and leave it alone and not ask why they have it, it is normal for him. He was born to a very sick mommy, in fact he was never suppose to be born. Those docs spent a long time telling me that I should terminate the pregnancy like it was some kind of parasite and I refused. They told us he would most likely make me sicker and it has, but that miracle was from God and I love him more and more everyday. I can't help but think that Damien was my piece of heart to leave on this earth if I don't happen to survive it.

     My son was named for Father Damien the Patron Saint of Outcast, who went to work on a leper colony when no one else would knowing it would be a death sentence. I pray that Damien has learned that compassion. Do you think I enjoy him coming to see me in a hospital bed...not even in the slightest, but he is my son and needs me. Would he rather see the tubes or hospitals or have to visit mommy's grave? I pray everyday for more time with him, more and more bipolar prayers going from begging and pleading for more time and thanking Him for my gift and then yelling that He won't take me without one hell of a fight. I think He is okay with that though.

     I've tried to protect Damien from the reality of it all for so long, but the disease has progressed so I am honest with him in an age appropriate manner. I'm hoping to get him a tubie pal so he can have a stuffed bear so I can explain what is going on with mommy. He is my world and my  heart and the last thing I want is to cause him pain. I fight everyday because of him, I wake up in pain, i don't sleep and I carry him even when the pain seems like I might burst because I love him.I will never give this battle up and I won't hide it either. 

     I understand that some people in my life are in denial and no matter how much I show them paperwork and teaching materials they will never understand. I'm just tired of being judged, I'm fighting for my life here and all I get is judgment and that shouldn't be how it is. My feelings are hurt, and I deserve it, but why when I'm severely sick and on my way to ICU my family doesn't come running? Is it because of some words that I have apologized for years ago already? I'm scared and alone. One line infection could kill me, this transplant could kill me rather than save me but we are out of options. The only reason I have stable wt is because of all the fluid I'm constantly pumping into me. I'm scared to close my eyes at night because I can barely breathe and I fear I won't wake up the next morning to the "momma" calls that I love more than anything. 

     IS it wrong that I crave that family, that I want someone to visit me when I'm alone at the hospital scared out of my mind, crying and scared I will never see my baby again. So, when Josh has the money to bring him to me I will never refuse. I pretty up and smile the best I can for that lil man so the only thing he sees is an IV pole. I'm so tired of being alone, I want a family, I want people to stand up for me, I want them to care if i live or die. Whether or not they want to believe it my situation is life or death and I could lose at any moment. They can't feed me which is a very big deal. i'm looking at surgery and needing to get back to the hospital tomorrow because of how sick I am now. I just want support, I want to be able to call my family and I can't. The only one who is there when she can be is Grandma Linda who spent twenty minutes hugging me the other day telling me if I die I will be taking her with me. There is nothing better than hearing that. I feel like I somehow never measured up to what they wanted of me and I'm sorry for that, but I am not sorry for the fact that I love my son and I don't hide this from him. He will grow to be compassionate to others and hopefully use that compassion for something good. 

       To those who disagree, I do protect him from the scary stuff. He does't know how much pain I'm truly in and he doesn't know the outcome without transplant. All he knows is mommy has some ouchies that sometimes the doctors have to take care of in the hospital. He is love by so many and yet I question other's devotion to him. Am I jealous of another child...no...I'm pissed off that my son is not as important, that it is okay to drop everything for one daughter to get to work, but another who needs the hospital it isn't. I'm so tired of being alone and it isn't fair that Josh handle all of this on his own. I feel myself slipping away and there is nothing I can do about it. I know I won't live to be thirty without transplant or much longer without TPN and that is dangerous enough. What am I suppose to do? I want to be loved now while i'm still alive, not have a group of family show up at my funeral and act like they gave a crap about me yet never answered any of my messages pleading with apology. 

      I am scared and I still smile every day when I walk in t hat room to pick up my son no matter how much pain I am in. How do I make people understand? I'm the best mommy I can be to my son and a pretty darn good one for one who is dying. I know I'm dying whether or not anyone wants to accept it. I need a miracle and I've already gotten one so I don't expect another, I simply hope. I'm tired of letting people make me feel like a bad mom, I do the best I can and I protect my son with every ounce of me and teach him. He has a little friend who is a tubie and never once has he ever messed with him. I find that compassionate. Feeling too sick to write much more, probably going back to hospital tomorrow which means I will update you via blog most likely. Good night and God Bless all.