May 19, 2009, Sonora, California, 8:17 p.m., P.T.~
Dear Journal~
Heather Danielle Abramson here. I hope this finds you reasonably healthy; I'm doing okay. I have my bad days to go along with the good; it all balances out.
I live in Sonora, California, with my husband, Ted, and our two children: we have a daughter, Berry Michaela, and a son, Tyle Nehemiah. My daughter, who is six, is healthy; our son is not. He has a neurodegenerative disease known as Canavan's disease, which threatens to take his life by the time he reaches the age of five (that is, if he lives that long). Our son is four, and his health has deterioated to the point to where he needs total care.
Right now, Ted and I are looking for options as to what to do regarding our son. We are looking for the possibility of placing him in an institutional or hospital setting: the demands he's placed upon our lives has us close to the breaking point. We don't know which way to turn.
People tell us all of the time to pray, or turn to God. We believe in God; however we don't believe in the Messiah or the fact that he's come yet. How can we believe in a Supreme Being that only hurts innocent children? We didn't ask our son to be born like this: we feel as though God's punishing us. Why, we don't know: we've gone to temple regularly, we've read the Torah, we've fasted/prayed!
What kind of a "loving" God would punish an innocent child by giving him a terrible disease that threatens to kill him before he even starts to live? It doesn't seem right or fair!
I have talked to our rabbi regarding this matter; he doesn't seem to have any easy answer for us. He tells us to keep praying, relying on God; we're ready to give up on God!! He's done nothing but bring us heartbreak!!
If I hear one more religious "nut" "preach" to us, I might go clear out of my mind!! I've had it with "religion", let alone, God!!
Am I that terrible of a person to have to go through what I am with Tyle?? He's just an innocent little boy who should be laughing, running around, annoying his sister; he deserves have a far better life than he is having now! I don't want a diaper-clad, tube-fed infant for a son; I want a little boy who can wrap his little arms around me, pepper my face with slobbery kisses, and tell me that he loves me!!
Damnit, that damn alarm of his is going off again! It seems it goes off a hundred times a day; I am ready to throw it out of the window (and Tyle not far behind it)! I have to go and see what is going on; I would ask you to pray for me, but it seems as if God's given up on me long ago!
So long for now; don't know when I will write in here again! My life's too f***ed up as it is!
~Heather Danielle. :( >tears!<
