I've been looking all over the Internet for a support group for women who chose to carry a baby with severe defects to term. I've found several, including www.benotafraid.com, but I am not satisfied with them.
All of them are built around a Christian belief system. All of the stories on those sites center around a strong faith in God, which I don't have. I do believe in a higher power, but it is not really the God of Christianity. Things that have happened over the past few months (especially this situation with Jenna) have reinforced my need to move away from the faith of my childhood.
Most of the people in these stories say the reason they didn't terminate is because they believe God should decide when to end a life, that God gives life and God takes it away. I may alienate some people with this, but I don't really believe that.
I want to find a site for people who decided not to terminate because they wanted to give their child a chance or who didn't terminate because they didn't have that option, like what we are going through. I can't join those other boards, because I just don't believe the way those other people do.
I talked with my therapist today, and she said I ought to start one of my own. She said I can't be the only woman out there who is going through this. I feel very alone right now, because most women in this situation who want to terminate are able to.
I'm trying to find something good in all of this. Not a reason, because I don't believe everything happens for a reason, but I want something good to happen because of Jenna's life, no matter how short it is. Maybe I can start a site for women who are like me and need support, but who aren't Christians or who don't have a strong faith. Maybe that will be the good in all of this.
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4 comments:
I totally understand what you are saying because I also believe that there is some sort of higher power, just not any form of gods that people worship in general. To me, if there is a god, none of the world's suffering would happen.
I truly think that you should start your own support group as I believe a lot of other women joined those support groups due to lack of choice.
You go girl!
What Grace said,I too believe. I hope you can find or create the right place for youselves and others like you!
Perinatal hospices were created for parents in exactly your situation. I worked in NICU for years when this was a new concept, it's now much more widely practiced. Can you contact your local NICU Social Worker for more information? OBs may not be familiar enough to point you in the right direction, Perinatologists and Neonatologists may have just the right program for you.
I'm horrified that you couldn't access the right kind of services sooner, you are very strong not to just give up. Keep doing what is best for your sanity. You are not alone. Keep reaching out for the help you need.
I completely understand you point of view. After losing my first child, a perfectly healthy baby at 24w 5d last Christmas Day, my relationship with God has been challeneged. I was raised Catholic and truly believe in a higher power, but not necessarily from a completely Christian point of view. Had this baby had trisomy 18 I may very well have done what you have for the same reasons. I truly admire your honesty and strength. You and baby Jena are in my thoughts and prayers.
Allison (Dashiell's Mom from BBC)
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