First off let me tell you NF sucks! If you have it, life is not the same as everyone else has. I have NF, but it's not bad. I didn't know I had it, never knew until Dr's dx my daughter. I never even understood what it was. I was hurled into a world of maybe's and I was told for the first year that it wasn't life threatening! BULLSHIT!! I now know my child is going to die. Slowly and with a great deal of pain. She now has medication that releaves some of the pain. There is no cure, no hope, not a damn thing anyone can do. As time passed ( 9 years ) I've seen them open her head, her chest, her arm, her neck and her belly. She has a poop bag and she will never poop like a normal person. This alone pissed me off. All those things she learned as a baby are gone!
I haven't figured out my purpose in doing this. I will figure it out as I go along. Who knows maybe I will sell it and give all the money for research. Which leads me to the next thing, please read it but don't steal it. This is mine. It's my pain and my daughters. I can also swear here... it's my blog. If you don't like it and can't take the f bomb or much worse, you shouldn't be here.
My daughter is going to die. When?? I don't know and I don't want to know.
Subscribe to:
Post Comments (Atom)
I'm so sorry to hear how severe Gabbies Nf is, that poor girl. All of you, it must be so difficult, I bet you're the one keeping the family on an even level, whilst in your mind you're in bits. I really don't know what to say. I hope you get to have as many as possible happy days, with fun and laughter, with Gabbie, and the boys.
ReplyDeleteTrouble with nf is I really don't think they know enough about it, and complexities. But they won't admit it.
It sounds so trite, but it's not fair. There's evil so called humans in this world, nothing wrong with them..healthy etc...
You have every right to swear as much as you want. Why the hell should you keep it in. You need somewhere to let rip. It's self desructive to keep bottling it all up, and if a blogging page is a place you feel comfortable in, then let it be. I doubt very much any one would condem you for swearing. You let rip with agusto. Put some of that stress in words, put them here, might help release it. It's your blog, you're allowed to swear. And yeah if anyone disagrees, Ill tell them to fuck right off too.
Thinking of you..Big hug to Gabbie
Jxxx