March 18, 2014

Dear Diary,

A moment ago I was just thinking to myself. I had a random thought about styling my hair, and it made me think about sisters helping style each others' hair, then that made me think about how I don't remember if I ever helped mine do her hair. It bright back memories of her as a child as I tried to think of her hair and what it looked like. And I just got so sad thinking that she will never be that little girl again. She will never have that innocence, even though raising her was still a bit of a struggle back then.  We had no idea it could get  this bad.
 Last night the therapist recommended that when she's gone (either from being removed and placed in a therapeutic home, or when she turns 18 and is asked to leave) that we range grief counseling as a family. Because this is grief - we've lost a family member that we will never get back. Except it's so much worse because with each day the depth of this grief grows. The girl we thought she would grow up to be is gone, and the grief intensifies as we are reminded of that daily.
This is grief, and it hurts.
 A. Bender

March 17, 2014

Today I spoke with my parents' therapist. Today I tried to convince them my sister should no longer be living in my parents' home. I never thought I would be trying to convince someone to remove her from the family. I tried to explain everything that I think and feel, and I realized how hard it is to put it all into words.

There are no words to explain the desperate feeling of wanting someone you love to get the hell out of your life and the lives of other people you love. There are no words to explain the feeling of loving the little girl in those baby pictures but wondering if you are learning what it might feel like to hate the teenager that little girl has grown into. There are no words to explain the feeling of wondering if your sister will end up killing your parents, directly or indirectly.

There are no words for this.

A. Bender

Dear Diary

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

FAS

I have an adopted younger sister with Fetal Alcohol Syndrome (FAS), and I have some things to say about it.

In recent years, I have learned that some people do not know what FAS is or do not know the potential risks of drinking alcohol while pregnant. I have even heard some say they think it is healthy to drink every now and then, even while pregnant.

The reality is that drinking alcohol while pregnant has been proven to be more damaging to the baby than doing drugs while pregnant. When alcohol is consumed during pregnancy, it inhibits the development of the parts of the brain that control decision making, distinguishing right from wrong, and understanding socially and emotionally appropriate interactions. 

Basically, alcohol causes physical, permanent brain damage to a developing baby. A few years back I even read a peer reviewed article stating that FAS is the number one known cause of mental retardation, and it is completely preventable.

I do not know if that statistic is still accurate, but I do know that I have seen firsthand the effects of FAS, because FAS has destroyed my sister and given us hurtles in our lives that we never expected we would encounter.

Ever since we learned of her diagnosis we have known the possible implications of FAS, but it wasn’t until recently that we truly began to fully understand them. Academically, she is a perfectly average girl. But she has nearly no understanding of how to interact with others appropriately, she is unable to moderate her emotions and behavior, and her concept of right and wrong is fairly limited to what elicits a positive or negative reaction from someone. 

My family has gone through a lot of heartache throughout the past year and a half as my sister has tried to cope with her depression and inability to relate and attach to her life. And it feels as if there is nothing we can do but helplessly wait for what will happen next or what she will do next, because we have exhausted every possible means of support in attempts to help her.

I was inspired by her and her struggles to get a special education degree, yet even with my education I am at a complete loss for how to help her at this point. I don’t know how to help her anymore, and this has left me feeling lost, useless, and hurt. These trials have made us face the reality that a stable, loving home hasn’t and won’t fix the damage FAS has done to her. She’s brain damaged, and honestly no amount of time or love is going to fix that, because someone made the decision to drink alcohol while pregnant. I don’t view my sister as a hopeless cause, but absolutely all odds are against her. At this point, all we can do is lift this up to God and fervently pray that he shall direct our paths and give her peace.

Please know that I am not telling you this with the intent of receiving your pity or comfort for the struggle we seem to be going through. I tell you this because I want everyone who will listen to know there is no safe time to drink during pregnancy. I beg of you, please listen to this. No amount of alcohol is safe during pregnancy, ever. My sister didn’t have a choice in what happened to her, but you have the choice to educate yourself and others close to you of this completely preventable cause of disabilities in babies. Please, don’t take any chances. It isn’t worth it.

~A. Bender