Saturday, September 17, 2011

Sovereignty of God in FASD

I believe strongly in the sovereignty of God. Without this belief, I would be nothing. I believe with all my heart that things happen for a reason, and that God has a plan. I know that Akila was pre-destined to be my daughter and I her mother, and for this, I am eternally grateful. Grateful.

For it is through Akila, that I see my own sinful heart reflected daily. I am reminded of my weaknesses and my failure as a human constantly, and of God's forgiveness and the sacrifice of His son for my sins. Do I deserve this? NO!!!! Was that loud enough for you all? NO!!!!!!!!!!!!! NO!!!!!!!! Please, stop with the, "you are amazing and Akila is so fortunate or lucky to have you and you don't deserve this and there is a special place in heaven for you and does she know how fortunate she is to have you" and the list goes on and on and on and on and on and on and on and on and on and on and on...... you get the picture.

Let me say this loud and clear. Akila does not deserve the brain damage that has crippled her life. Please stop feeling pity for me, and feel compassion for her. Can you imagine how hard it is to be her? So many of my friends imagine how hard it is to be me. Don't get me wrong... I truly appreciate your caring and support. But really, Akila is the one who needs your support, prayers and love the most. She is the one who is so confused right now why she is living in a home without her family. She is the one wondering when her mom and dad are going to come and save her from this "terrifying place" (her words, it is a wonderful home, but it does have other children who are challenging, and I can understand how they could scare a child. Within a week or two, we expect her raging to start, and then she will be the "terrifying one").

Akila is the one who does not have any friends to sit with at lunch. She is the one who her own mother hates to shop with. She is the one who her siblings cringe when she comes home with the PCA. She is the one who her father tries not to show his dismay when she wakes up early in the morning. She is the one who has to sit in countless Dr. meetings and listen to all the "bad" things she has done over the past month or two. She is the one, who was innocently growing inside of a woman's womb, holding on for dear life as she had a chromosomal abnormality called Turner Syndrome which has nothing to do with her FASD diagnosis (1 out of 1,000 fetus's with this abnormality spontaneously abort- so she already was a fighter in the womb to the enth degree- 15% of all miscarriages are Turner Syndrome babies).

While she was battling this chromosomal challenge, she was also waging war against heroine and alcohol that her birth mom was consuming. Now, you might be getting angry and judging her birth mom. Be careful, that is a slippery slope. I pray daily for her birth mom. I know with all certainty in my heart that her birth mom was also FASD. She was married at 14, had a baby with her husband, had another baby with another man, went through alcohol treatment at 16, had two abortions, and then had Akila at age 19. That is quite a lot to do in a 5 year span, especially at those developmental ages. Both of her parents were alcoholics. It was a scheduled C-section, and she was positive for Heroine. The writing is on the wall. She had FASD. If Akila is fertile, which I pray she is not (another post), she will more than likely produce a FASD child(ren).

The instigator to me writing this post, is something somebody I am close to said. When I was informing this person about the crisis home situation recently, this person said, "Well, you threw your hat in the ring and drew the bad hat Barb". Translation: Akila is the bad hat. This hurts when I love her with all my heart and know that she is loved by the One who created her in His image.

This was a sucker punch. If this were someone I had great respect for and was on the same theological page with, it would have hit me to the core. It did not do that, but it did sting a bit. It annoyed me more than anything, and I moved one. But it has made me think about all fo the other comments about what an "angel" I am. And how I don't "deserve" this. Well, let me tell you this now. I am not an angel. And i do deserve this. I am a true sinner.

I believe that in many ways Akila is like the majority of us, but with out all the finesse of covering up our sins. She wears her sins on her sleeves, we hide ours under our facades. She has no facades, she says it like it is. She does not have the filters that the majority of use do, she says it like it is, curse words and all, gore and all. We all have a certain amount of evil in us, but we like to keep it under wraps, and hide it under our bible memorizing abilities, or our good deeds, or our home schooling, or our volunteering, or our hard work, or our committee work or .... the list goes on. Akila wears it on her sleeve. Her approach is kind of refreshing. At least we all know what to expect and we know what we are walking into, that is for sure.

I am really on a rampage here, aren't I??? I am about ready to get off of my soapbox. My point is, please don't think of Akila as a burden, or as an evil being. In so many ways, I think that you and I are probably more full of evil than she is. She is just a sweet innocent disabled girl who is doing the best she can with the tools that she was given. She has organic brain damage. She sometimes, and when at home, rages violently, often. But her family loves her dearly. And her God loves her even more so, as He has pre-destined her to be His, and to be a part of my family. And for that, I am so very thankful. I have learned more about God, about the Bible, about my husband and about myself through Akila than I ever have in my whole life. And for that, I am grateful.

Please don't be offended if you have ever called me an angel. Or told me there is a special place in heaven for me. Or many of the other statements I heard multiple times a week. Just know, that I prefer your energy to be spent on Akila. She is "the least of these" (Matthew 25:40). She needs your prayer, your support. We do also, but she really does. Especially now. When she is scared. Lonely. Confused. We appreciate and need your prayers as well.


GB's Mom said...

I understand. I love GB with everything in me and she did not ask or deserve the permanent brain damage she deals with on a daily basis. Thank you for an eloquent reminder. I pray for you all.

Anonymous said...

Thank you. That was an amazing post that shed new light for me on families I know. And, it was extremely convicting. Your paragraph about us "hiding our sins and our facades" is something that has been simmering in my heart for well over a year - you put words to it. Thank you for sharing your heart. Thank you for pointing us to Jesus.

TheLazyJ said...

Amen. Just Amen, Sister!

Anna said...

Thank you, thank you, thank you for your wonderful and honest post. Thank you.

Kelizah said...


Julie said...

Amen!! Amen!! Amen! This is an amazing post...thanks for sharing your heart and Akila's!

Anonymous said...

Just love you both! You know how I goes without saying. You are a great Mother and I KNOW that Akila being with you and Michael was no mistake. You will all make it through this!! My very wise Grandmother always told us as kids..."God does not make junk". Akila is blessed to have you, and you her. You have it coming.


AKBrady said...

Amen. Amen. Amen. Just how I am feeling tonight, myself, as my autistic/impulsive/Klinefelter's teenager told me over the phone from his psychiatric facility that I never, ever, could understand would it is like to be him.

Kristin said...

Barb, I love you post, it made me think. About Aika and the need for compassion when thinking what she is going through. Thank you. But it also reminds me again that if you think your PURPOSE in life is to better know God through experiencing (and reflecting) his attributes.... compassion, patience, kindness, strength, forgiveness, etc. Then Akila is the best blessing God could have ever sent you. As long as you respond to her with God's attributes and recognize her as a blessing. Which it seems you do. Which is wonderful, big hug. :)

Anonymous said...

I commented last night on your latest post, but I just have to add to that comment here.

When I say that God must trust you to give you such big challenges, that includes Akila! No, I don't think God "gave" her these problems, but I do believe that God knew us before we were born here. He knew what she was headed for in this life, and trusted her with challenges that He knew her spirit was strong enough for. And He knew that she would need a strong backup team to help her learn to be the best she could be.

Like it or not, deserve it or not, I admire you. My little guy has problems that we deal with on a daily basis - but nothing like you and Akila are going through. I look up to you, and this post is a really good example of why I do!

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