Venting
I’m angry that despite my best efforts with my children, that there is a black cloud following us. We had a good weekend that was wrapped up with Rachel not being able to go to sleep for one reason or another (cause: dementia).
I cannot imagine believing in an omnipotent being. I cannot imagine believing in miracles. I cannot imagine believing in prayer. I cannot conceive that prayer actually does anything other than provide comfort to those that believe.
I don’t believe in prayer. I don’t believe in miracles.
I’m tired of having to recently deal with the vanishing act. People that don’t make any effort for several years to be in our lives… but the moment that something “bad” happens they come around and try to be a part of it (and possibly even shoving God down our throats). I won’t name names but the people who have invested in me, Rach, John and the other kiddos for a long time can easily guess that I am talking about the opposing coast.
I want to reaffirm my respect for people’s right to believe in God. I 110% support and respect your religious beliefs as I always have. This entry was to vent at all of the religion and “fast fixes” that people have been shoving down my throat recently. A multi level marketing scheme by the name of Glycol won’t fix her, neither will acupuncture, hypnosis or other crap.
And as much as I don’t subscribe to Christianity or another other mainstream faith I cry myself to sleep every night hoping that I will be reunited with Rachel after we both die. This can’t be my only chance to get to know her. The pragmatic side of me knows better than to believe in heaven but the emotional/mommy side really needs to know that I get another life to love my daughter who is clearly transforming from Rachel into a very angry, confused, blind and depressed child. Rachel doesn’t deserve this. Julie, London and Boston don’t deserve this.
I can deal with *ANYTHING* that happens but my children shouldn’t have to.
I might have to actually FLIP OUT on the next person who tells me they are praying for a miracle. This disease is ALWAYS, 100% fatal. Rather than pray for a miracle, donate to the BDSRA so they can help fund research. Science is Rachel’s only chance.
TeamRachel aka mrskatvon is both a website to gain public awareness of Juvenile Batten Disease (which affects my oldest daughter) as well as a journal to remember the events in our lives.
Rachel was diagnosed with Batten Disease in July 2009 and while we knew something was "not right" we had no idea that such a nightmarish disease existed. There are dozens of nasty, orphan disease which affect people both very young and old.
Aside from dealing with the changes of Batten Disease in my daughter, Rachel, I have tasked myself with making life memorable for all of my children to make sure that (at least) 3 of them grow up to be as well adjusted and happy as possible.
I am sorry that you have to deal with so much crap at a time when all you should be doing is focusing on your family. Prayers for a miracle from those that have faith might work with cancer, but you are right that they won’t here. People are well-intentioned I am sure, but they are not looking at it from your eyes. I do keep Rachel and your family in my prayers, but only in that I hope you find joy where you can and that science finds a way to keep her cognizant and with you as long as possible.
I can relate to you not believing in prayer or God. And though I am obviously not in the same position as you, I would feel the same way..hoping there was something more than just this life to be woth my kids. I think it would be grand to have faith–the people who believe seem to take great comfort in it. However, I just can’t. I am sorry you have one more thing to deal with. Hugs.
I am sorry….and I’m sorry for keeping on saying that. You know I wont be going anywhere anytime soon!! I was worried about you…Rachel isn’t sleeping now, either? You got every right to believe or not believe in prayer or miracles or whatever. I miss you and want to give big hugs….You really know who your friends are that don’t disappear.
Do I need to gather some WWJD mafia and kick some fake Christian ass?? I may be going to hell for that.
I hope you know I love you and if you need me I will be on a plane out there to help with whatever you need!
still here.
I love you. I am sorry you are going through all this and especially sorry that people are trying to force you to believe in their choices. I love what Janie said. She has a way with words. LOVE YOU!!!!
I know I’ve said I’m praying for you & your family…not for a miracle so much as strength. I only meant to be comfort & support.
Hey-first time I’ve read the blog….hang in there don’t let turkeys get ya down.
just kidd’n trying to make ya laugh. 
I have mixed feelings on the religion thing-you have no idea-such a long story there someday we will share.
I do however, believe in an afterlife-who knows where-many major religions do-go Buddhist!
Hey – you know I am with you, even as a chritian. I am sorry people are so ignorant.