I have decided that I need a place to get my thoughts out. There are so many things going around in my head sometimes that I just don't feel like I can talk about because some people would probably think I'm crazy. In fact, writing about it on here will most likely help me stay more sane. Many times, I won't have nicely revised and wrapped up stories with sweet morals at the end. This just needs to be raw and unfiltered events that I need to talk about. This just needs to be my diary. And maybe someone with similar troubles will stumble upon this and realize they aren't alone.
I don't live with my parents anymore, but having a sibling with Fetal Alcohol Syndrome (FAS), or Fetal Alcohol Spectrum Disorder (FASD) is still freaking difficult. When she was younger, I used to think that it was just a small part of her, but as she has entered her teens we have all realized that she is FAS. It consumes her, and it consumes our time and lives. It is absolutely nothing like having a typical sibling, and honestly most people will never ever understand what it is like without experiencing it yourself.
Her behaviors have gotten really bad lately. Sometimes I cry at night thinking about her, what we know she has done, what she might be doing, and where her future seems to be headed. Sometimes when I pray I tell God I'm afraid to tell Him everything I really want to pray about because it will make me cry again, and I just don't have the energy for that right now. I tell Him that right now I really need to just place my trust in the Holy Spirit that He will know my prayers, even if I can't really explicitly speak or think about them. I tell Him that I know He's in control of everything, but I will never ever understand why she is the way she is and how He can possibly use this. I ask Him to please let her in to heaven when it is her time, because inside she isn't really ever going to be more than a child without understanding of the world.
Sometimes I have nightmares about her. Sometimes they wake me up in the middle of the night, and I end up crying some more. Sometimes I don't remember the dreams and I just wake up with a weird feeling, and then a few hours later something will remind me of everything I dreamed about, and I get that awful gut wrenching pain in my stomach that makes it hard to stand up. I've never been able to talk about these nightmares out loud because they are so scary and painful to me. About a month ago I dreamed I was just sitting in my living room when the phone rang, and as I answered my phone my mom told me she had gone "home" to heaven. Yesterday I had a nightmare that she got arrested for murder. These are legitimate fears we have for her future, and they are terrible to deal with awake or asleep.
I think the thing that is the hardest is that there are just absolutely no support groups. Not really. Every website out there I can find is either a detailed description of the disorder (thanks, we already have the life size version) or a discussion board where other people go to ask for help, more people say they are really sorry to hear about their troubles and they are dealing with the same thing too, but there are no real solutions. There are no solutions out there for when you are doing everything the websites tell you to do and it doesn't work. They just say keep trying, but what happens when it is too much to keep trying? Where is the support for the parents and family that don't know how to keep trying?
I just hope and pray one day people knock some sense into themselves and just stop making choices to drink and cause complete preventable disorders in their unborn babies. Statistics say 1 in 100 children are born with FAS. That is comparable to Autism. It is also more prevalent than Down Syndrome, Cerebral Palsy, SIDS, Cystic Fibrosis, and Spina Bifida combined. It makes me so sad to think of those poor babies out there with this hard road ahead of them. I feel sad for the babies and for the families. I pray one day all those babies will be made perfect by God in His Kingdom.
A. Bender
