Monday, March 3, 2014

Even Know-It-Alls Don't Know It All

I'm just going to disclose something here... I have a very serious dislike for know-it-alls.  I'm pretty sure most people do.  Nobody likes to interact with someone who has all the answers to everything.  It's annoying, mostly because it's ugly pride and actually completely impossible to know it all.  You know what I'm talking about... the people who no matter what the subject, they are an expert and can 'tell you all about it'...  drives me crazy.

In July 2012, I wrote a blog post called The Truth About Anencephaly.  I still regularly get comments on it - to date, it's been read 39,444 times with only about 54 comments...  well, the one I got today made 55, but I probably won't post it on that post.  I'm so grateful for how far her story has reached.  I was actually blown away when I went to see how many times the page has been read because I had no idea it was that high!

I have had a few very mean things said to me in relation to this post so when I see a comment come through my email, my belly flips and I brace myself as I open it.  Lately, I have been pleasantly surprised to find all encouraging responses.  Today, I received one from a know-it-all that I just *have to* respond to.  It's not really that big of a deal, I wouldn't say it is mean per se, but it's got my blood boiling and so here it goes... 

This comment was in response to a line I wrote in that post. The reader writes:
" 'And so while it's very obvious looking at my girl in this photo that she has been affected by sin' 

How someone looks or what defects they're born with has absolutely nothing to do with "sin."

Important findings about some factors that affect the risk for anencephaly:

Low intake of folic acid before getting pregnant and in early pregnancy increases the risk of having a pregnancy affected by neural tube defects, including anencephaly.

There has been a 27% decline in pregnancies affected by nueral tube defects (spina bifida and anencephaly) since the United States began fortifying grains with folic acid.

Babies born to Hispanic mothers are at an increased risk for anencephaly. Reasons for the increased risk among Hispanic mothers are not well understood."
 First of all, I would like to share with you how I started and ended that thought because I hate it when people take things out of context...  I said:

"People will say things to make me feel better like "This was God's plan" - and I agree that God has all things under control, but I do not believe that God ever desired - or desires - these types of devastating things to happen to us.  Sickness and death, pain and sorrow, are a result of sin.  God never wanted us to have to endure these things.  But because of the fall of Adam, we do - and so He promises to be with us through it if we believe in Jesus.  And He promises that when this life is over, all who believe in His Son will live forever in heaven with no sickness or death, no pain or sorrow.
And so while it's very obvious looking at my girl in this photo that she has been affected by sin, I also experienced first hand what it's like to hold my child as her spirit, which is whole, went to live forever in paradise.  And who knows, maybe she wasn't really 'missing' anything... maybe we all just have extra growths on the top of our heads...  because I'm certain that she is perfect just the way she is.  And I'm proud to be her Mama."

Second of all... ALL OF US are affected by sin.  It's the reason we die at all, and it IS absolutely the reason that anything like anencephaly exists to begin with, including normal aging.  I am not saying that Rachel - or I - was being punished for our sin.  I was saying that if sin didn't exist in this world, there would be NO death or dying or ANENCEPAHLY.  Whether we choose to acknowledge this truth or not, it's the truth.  It's like gravity - you may not acknowledge that you can't fly, but try jumping out of an airplane without a parachute and you will learn that gravity wins.  God's Truth is like that.  You can't escape it and you can't change It's mind.  Gravity drags you down and sin causes death.  It's the way God created the universe and the way He punishes sin.  You don't have to like it or even agree, but one day you will have to step out of the plane.

My next issue... If anyone thinks at this point in my journey - 3 1/2 years after I watched my baby die in my arms that I have a need for more information, I don't.  That little blurb came with no heart and straight 'facts' with seemingly no real comprehension of anything I said.  I have done enough researching and talking to other moms to know more than I want to or I need to know about anencephaly.  If there are new things to consider, I'm not interested - I have enough to worry about with all I already know.  It becomes very difficult to take my thoughts captive if all I ever hear is how if I do xyz it lowers my chances of having an anencephalic baby because guess what?  I ALREADY DID and I know it can happen again. So while it's fun to think I might have some control over it happening again - say if I eat enough of these 'fortified grains' that this person speaks of - I don't want the control.  I don't want it for the future, because if I take it for the future, I have to claim it for my past and Rachel's "defect" was not my fault.  It happened - get ready for this... BECAUSE OF SIN.  Not specifically hers, Not specifically mine.  Just because sin is here and from the moment we are created, we are dying.  You've heard death is a part of life, haven't you?  Yes, that's right - but it wasn't always.  God created us good.  Perfect.  Adam and Eve sinned.  Death exists because of sin. 

But you know what else?  God has USED it for my good and HIS glory.  It's not just about her missing her brain, people.  This is the story of Rachel Alice Aube and the unbelievable legacy God has used me to help her leave.  Her life is so much more than her defect and so I don't actually desire to know what caused it.  I could literally go completely insane and die of a broken heart lamenting over why this happened if I allowed myself to mull over it and not just trust God with the why, the how, and the what if it happens again....

But I just have to say it... do you really think I don't know about the folic acid line at this point?  Do you really suppose that I made it through tons doctors visits, dozens of ultrasounds, and multiple genetic counselors without any of them filling me in on that?  It was literally the very first thing I learned... and you know what I said when they told me? 

I said, "She's my daughter and I love her and I will not give up on her... no matter what comes our way."  I listened to them when they were saying it was probably a folic acid deficiency, but to be honest, I never gave that too much weight.

I started taking more as they recommended, but I asked for the blood test that would confirm this suspected folic acid deficiency before I started - I was told and I quote "We don't usually do that kind of test."  OK, so that begs the question... if you don't 'do that kind of test' when someone has a baby with anencephaly, then how in the world do you know that a folic acid deficiency plays a part?... Oh, that's right... you don't.  And here's something interesting for you to know...MY FOLIC ACID WAS FINE. that's right, "Normal."  And I was on folic acid before I got pregnant... just another interesting fact.  Not a guess or a statistic... a fact. 

On top of this, I have been working with Duke University in their anencephaly study and after well over 25 years of studying anencephaly, they *still* do NOT have a definitive answer.  They told me that they believe folic acid can play a part but have been unable to prove it.  Probably because of people like me who actually get tested and find that folic acid wasn't it.  Does that happen?  I'm sure it could be.  But if it was *the* reason... it would have been proven by now.  *The* Reason is the effects of sin.  It's the same reason that things like cancer, diabetes, and yes, even know-it-alls exist.

We all know someone who has died.  Tell me, which of your dead loved ones would you want someone talking about like they were nothing more than a number or result of your being deficient?  Which one of your family or friends would you like to be told could have lived if you had only eaten enough grains? 

So now that I've made my 'points', which I'm aware plenty of people could - and probably will - debate with me... and don't really leave me feeling much better...let me humble myself and share my heart.

I wrote that post as part of my grief journey.  I wrote it because I realized that I needed to stop running from her anencephaly and accept that it was part of her.  I wrote it because even after 2 years of research and another healthy baby, anencephaly had a grip on me.  It had me scared.  Sometimes to a point of being paralyzed. 

I would go to great lengths to only let people see Rachel in photos that hid all the 'imperfections' and all that was missing.  I wrote that post because Rachel was not about science.  She was not about deficiencies.  She was not about eating more grains.  And while I understand that many people who find that post do so when researching Anencephaly for school or some other scientific thing, I would hope that anyone with half a heart could see that I was not writing a textbook... I was writing the story of my love for my daughter and God's love for me as I mourned the loss of my baby and felt the deepest pain I have ever experienced. 

I wrote it to share the story of Redemption. Her redemption.  My redemption.  And if you put your trust in Jesus Christ and humble yourself before His throne... Your redemption.  It's a mystery of love and grace and mercy and although it is a beautiful thing, it's not always painless getting there.  I would go so far as to say it's never painless. 

And if I'm perfectly honest, when the anger fades, what is really there is hurt.  What's left is sadness.  Guilt.  Questions.  Uncertainty.  Fear.  Tears....

Because the only thing worse than putting your baby in the ground is being told you could have stopped it.  The only thing worse than the thought of it happening again is the pressure that comes with believing that I can do the right things and avoid it.  And the only thing worse than my daughter having the top of her head and most of her brain missing is when I do such a hard thing as share that photo with the world, to be sent cold and indifferent "findings" as if it's a photo of anencephaly and not my baby.

There has yet to be a time that someone has offered another possible thing I could have changed, that I have not felt chaos in my soul.  The *only* time I am at peace with losing Rachel is when I am totally surrendered to God's ways, believing His plan for me is better than my own, and completely trusting Him with my heart - both in what I have endured in the past and what I could come up against in the future.  He's the only One strong enough to carry me through it.  And I'm so thankful He does.

I was sharing MY truth about anencephaly.   I never in a thousand years expected that anyone would read that and see my vulnerability as a time to jump in and correct me... even if they were thinking it.  I read that comment and I wanted to jump through the computer and shake them...Don't you get it?  You don't have all the answers.  And it's okay.  God does.

Even know-it-alls don't know it all.


  1. Hugs! <3 Rachel Alice Aube <3

  2. Rachel, I've been following your blog since April last year, which is when we received the diagnosis of my sweet Neysa.
    Your story gave me courage, the love you have for your sweet Rachel empowered me to do everything possible to show my baby all the love that I had for her in the short months I had with her.
    I respect you as a mother, and a lovely human being.
    Those first few months were so tough that I found myself struggling to be happy but I knew if I didn't I'd have so much guilt later - I had to make every moment count.
    I would read your blog and as it came towards the end of our time with Neysa I would weep - because I realised, to most people reading stories on our babies with anencephaly, it is just that - a story.
    It's not a reality until you have to hold your own baby and let them go.
    It is the hardest thing you could ever do.

    I remember sobbing at one of your posts, because I agreed with it, I felt your words.
    You said something along the lines of, "maybe we are the ones with the defect, maybe she's not missing anything at all and we all just have extra growths on our heads".

    That line gave me peace.
    I realised that in a way I was thankful that our babies don't have to know about this world that can be so cruel at times. They don't have to feel sadness and experience the horrible things that sometimes life has for us.
    They know only peace.

    Your beautiful Rachel felt every bit of love that you and her wonderful family felt for her.

    You gave me the courage to opt for my first c-section, I wanted to give my sweet Neysa the best chance at a life and I was hovering between a natural birth and c section for a couple of months.
    Neysa lived 2.5 hours and I'm almost sure that she wouldn't have had the strength to fight through the natural birth.

    I thank you Stacey for having the strength and courage to share Rachel's story with us all.
    I'm so sorry for all the pain you have had to endure, also for the people who feel the need to air their "opinions" where they are not needed.

    This page is not for negativity and nobody who has been through something like this should have to read such things. This world can be a cruel place sometimes.

    I, myself am not religious, but only because my parents were not so I wasn't brought up to be.
    I must admit, since all the sadness and lonliness I have felt from losing Neysa, I have been turning to God more and more. I hope that some day I find out the meaning behind losing our children. I'm not very well educated on God or religion but maybe one day I will get myself there.
    Your baby would be so proud of you and you should be proud of yourself.

    I hope you didn't mind me commenting.
    Sending love and strength your way.

    1. Mind you commenting? Are you kidding, this is the best thing I've read in a while!! I'm sorry to hear about Neysa...I'm so glad you had time with her. I'm honored that my journey helped you and, to me, knowing that makes it so much easier to endure the difficult things I do as a result of sharing our story. Thank you so much for taking time to write that. It means more than you'll ever know! Feel free to email me if you would like to connect more!
      Love & Hope, Stacy

  3. Is it strange that this post made me smile.? I stumbled across your blog a while ago amd have made a point to check in once in a while. (I remember at the oddest times.) I am a teenager. I have never been a mother. I have never lost a child. I never even knew anacephely existed until I found this blog. I am at this point not religious, I was at one point and maybe I will be again someday, but not right now. But even so, I felt like this post spoke the truth. About all of us. That we are not blond hair or blue eyes. We are not the empty space where our brain should have been or the eyes we have that cannot see. We are humans. Thank you for that reminder. In our world today that is so often forgotten. Thank you for that little reminder, because we so often forget.

  4. I just saw this post on Facebook & I thought you'd like to see it.

    I love reading your blog! May God continue to give you and your family strength.

    My little sister died shortly after birth too (not due to Anencephaly, but something similar).

    Many Blessings!

  5. I saw this post on Facebook & thought you might be interested.

    I love your blog.
    My little sister passed away shortly after birth due to something similar to Anencephaly.

    May the Lord bless you and your family & continue to give you strength.



We so appreciate your words of encouragement!
Thank you! ♥ The Aubes