I know pain

So I was thinking about Batten Disease and how I keep hearing that I should "stay strong", that "there's a reason for this", to "keep thinking positive". And the resounding statement I hear is that this is happening to teach the world something, to teach me something. And I think that's crap. There, I've said it. I won't delete it. Even if its wrong to say. And not because this disease hasnt taught me anything because it has. This disease has taught me what it's like to have no money: zip, zilch, nada. No money for groceries, diapers, and you can forget about a new shirt or a haircut. I haven't been shopping in over a year and my last haircut? Also a year ago. It's taught me to feel contempt and stripped me of sympathy and empathy. You don't feel well?Aww, poor baby. Suck it up. My daughters dying and she's ten months old. You lost your house in a fire? You can get another house so quit crying. Someone died at 105? She lived a long life and that's nothing to be mourning. Your kid has to get their vaccinations? well boo hoo. My daughter has had more needles put in here than I can count and you know what? She rarely cried. She wouldn't give them that--she was tough and snubbed her nose at the doctors like, is that all you got?? This disease has taught me jealousy. At all the mothers with their perfect little kids. Walking, talking, crawling, eating, playing. Those mothers have no idea what they have. They think they do and that disgusts me even more. They say they are sorry for my pain, but in reality they are sighing a relief that they aren't me. That mom with the sick kid. And you know what they all say? "I couldn't handle it if my kid were dying". As if I had a choice. Like I stood in line and asked for this role. Like I have the option to just "not handle it". Please. Get away from me. You know nothing about nothing. This disease has taught me that my job is a paycheck and if I left it tomorrow, I'd be replaced in a day and most would not remember my name. And if they did? They'd remember that I was the mother of a dying kid. This disease has taught me to lose faith. Why does my daughter have to die? For that matter, why does any child have to die? That's ridiculous. Sophia is completely innocent. She's done nothing wrong. She's an angel, such a sweet girl. She never fusses or complains. She can't see, crawl, hold toys, eat, play, or talk. She will never do any of those things. She's had so much pain in her lifetime, more than you can possibly imagine. I've watched nurses plunge needles in her wrists, arms, and ankles, literally digging for veins. What was I doing at these times? Telling her that she was okay, everything was fine. Really? I've sat through procedures that cut her back open so that spinal fluid could be drained for testing. I've cried countless times after EEG testing was completed and technicians used strong solvents that rubbed her skin and hair from her head. I've hoped for seizures just so the doctor could see what I see. I've asked a thousand questions to countless doctors and didn't stop asking until I got my answer, even when the answer made my stomach hurt. I've cursed out doctors and been a smart aleck when I felt that I was being talked down to or when I felt Sophia wasn't getting the treatment she deserved. I've spent hours on the phone late at night with on call specialists who prescribe medication for my daughter based on my words and her chart alone. Batten Disease has taught me despair and loneliness. I truly feel that I'm in this alone sometimes. I shut out my husband because I just can't deal with the emotions. I put all my energy into just getting through the day. That's it. That's my goal. That's my life. And when it's time for bed, I collapse for a few short blissful hours of nothingness. And then I hear Sophia cry, whine, cough, sneeze, move, or breathe funny and just like that, I'm back in the game.