The Truth About Anencephaly

This is a long one, but it'll be here for a while so take your time.....

On August 4th 2010, while pregnant with Rachel, I went for my ultrasound... the exam I used to think was mostly to find out if it was a boy or girl.  Would we need blue or pink? 

I left there with a box of tissues, a broken heart and a small piece of paper with words scribbled on it:

Anencephalic Baby.

That's what it said.  I had never heard of it before.  But, almost 2 years later, I'm not only familiar with the word, but what it means for a child of mine.

Death.

I have spent hours, days and even weeks of time telling people about Rachel and the condition that took her from us.  I have poured my heart out publicly if only to help even just one person choose life for their baby after receiving a fatal prenatal diagnosis.  I'm humbled to say that I have seen it happen.  I'm sad to say I've seen the opposite too. 

After getting Rachel's diagnosis, I shared with people that she was expected to die, but kept her diagnosis private for weeks.  I was so afraid of what people would think of her.  I didn't want people to give up on her or picture the baby inside me like a monster.

I remember seeing photos of other anencephalic babies while I was pregnant and coming across ones where the mothers were holding them without their hats on.  I was stunned.  I asked Matt "why would they do that to themselves?  Why wouldn't they just cover up their heads?"

And then I had Rachel. 

Matt and Kim (our nurse) were trying to keep her hat in place and I said "Leave it alone, I don't care".   A mother's love goes so much deeper than outward appearances.  I knew that, but I guess somehow thought I would not be 'that' good at loving unconditionally.  That I wouldn't be able to see past what was missing.

I was wrong.  I couldn't ignore her 'defect' and I didn't.  I loved her in spite of it.  I refused to let it define her.  I refused to focus on what I was losing - and instead threw her a birthday party, cake and all...  after she was already gone to be with Jesus.  What better thing to celebrate, really.  But that doesn't change that my heart was broken.  Seeing my baby in that condition was traumatic.  My life will never be the same.

On August 6, 2011 we held our first Baby Rachel's Legacy 5K.  We donated over $9,200 to Options for Women to help start a perinatal hospice program and more.... I talked about Rachel, how much I love her and how many blessings she has brought.  But I still avoided her anencephaly.

I feel like it's time to stop avoiding.  To stop being scared of it and what others will think of her. 


On August 4 of this year, just two weeks away, we will have our second Baby Rachel's Legacy 5K (walk or run - to participate or donate, see the buttons on the right side of my blog)  I will once again tell people about Rachel, her life, her death and the blessings she brought us.  I will smile and cry, like I have every single day since I got to hold that sweet baby girl in my arms....  but this year, I'm going to share about her anencephaly.  I call it an "Anencephaly Awareness" race because I want people to become familiar with the condition so that if someone got that diagnosis, they would know there was someone else who had been there and survived with Hope.  The doctors tend to assume anyone who is carrying a baby with anencephaly would have no desire to carry to term and give their baby a chance to live -or to give God control over how long he or she will live for.

But in order to really share about her anencepahly, I need to tell you the truth about it.

There was nothing easy about this journey.  I actually never knew life could be so hard and I've been through A LOT in my life.  Waiting to have her was torture.  Every move she made, I felt like I should be happy about and at the same time it only reminded me she was going to die.  It was the most complicated thing I have ever experienced.  I was guilt stricken and criticized every time I felt consumed by her impending death.

Giving birth to her (I chose to have an elective c-section to raise her chances of being born alive), not knowing if she would be dead or alive and how long she would live, was the scariest thing I have ever done. 

Seeing her without the top of her head and finding out what a brain stem looks like was numbing to my soul and only survived by God's grace alone.

Watching my kids hold their dead sister and having to let the funeral home take her away have left permanent visions as scars on my heart.

Leaving that hospital with only flowers and a wound in my womb to prove she existed was the single worst heartbreak I have ever felt.  It took a lot of pills to even get me in the wheelchair to get me out that door.  The anxiety was so thick I couldn't move into reality without being medicated.  We opened the trunk to pack her memory box for the ride home and her empty carseat greeted my eyes.  That will be a vision that brings tears to my eyes for the rest of my life. 

Walking away from her tiny casket at the cemetery a few days later was nearly impossible - and I never knew I would ever have to fight a desire to go dig up a grave... but that night as I sat in my livingroom with milk waiting for a baby who would never nurse and knowing she was in the cold ground, I wanted nothing more in the world.

Since that day I have struggled with my pain, fears, disappointment and lonliness.  I have dealt with tons of criticism and judgment.  I have cried rivers of tears, fought my anger, and been beaten down over and over - by people I don't know, people I love, people I thought loved me - and even myself.

But let me tell you the other side of anencepahly.

Until Rachel, I was surrounded by people who called themselves my friends.  They quickly disappeared and my life has been blessed with real friends.  The couple of real friendships I had, have become deeper.  I have met hundreds of women on line who know this pain... because of them, I have been given the blessing of comforting with the comfort I have received as we have helped each other through hard times.  And I do it better than I ever knew I could - because God Himself does it thru me.  But I've also experienced love like I never had before... both from God and His people.

I never knew I was a 'writer'.  This journey has revealed a God-given gift in me.

My faith was proven genuine as I clung to God and His promises through the hardest time in my life when I could have chosen to blame Him and run away...   Seeing how He pursued me and held me, even when I failed, grew my faith.

I  didn't know I was capable of directing large scale events :o)

My kids have learned what I mean when I tell them I would do anything for them.  I love them deeper, hold them tighter, and appreciated them more than ever.

I have a longing for heaven like never before and have had to take a good, hard look at what I believe about life, death and heaven - and why. 

My life is richer, more meaningful.  I have felt a pain I never knew existed because I have also felt a love I didn't know existed.  And both have lasted for much longer than I expected.  I will never get over losing Rachel.  I will never move past her or beyond her.  My life will always include my girl.  And she had anencepahly.

Last week at dinner, I asked the kids if they knew what anencephaly was.  It had dawned on me that I never really explained it to them either.  They said yeah, it's what Rachel had.  I asked, but what is it?  And they couldn't answer.  I told them and showed them the diagram we have and told them I could show them Rachel without her hat on if they wanted.  Isaiah wanted to know if we'd have to dig her up to see - and I told him we had a photo from the hospital.

Well, for 2 days Isaiah hounded me, even asking first thing the next day when he stood at my bedside in his morning whisper.  I finally showed him and he said "She looks yucky."  I held back my tears cause I didn't want him to feel bad.  He had some good questions about why her 'brains were sticking out' and I explained that we all have a brain stem, just hers isn't covered by her scull.  (I'll admit it was much bigger than I thought it would be, too)  Sam started copying him saying she looked yucky.  I finally said "Okay, that's enough, I understand your initial response, but now you need to remember that's my daughter you're talking about and I don't let anyone call you guys yucky, I'm not going to let you call her yucky."  Des jumped in and said "Yeah, Isaiah how would YOU like it if you had anencepahly instead of Rachel and we called YOU yucky?!"  And then Sam added "That my sister, that my friend!"

And all of a sudden, "yucky" turned into something to defend and stand up for.  And I totally get that.

The next day I overheard Isaiah telling his cousin "Did you know that under Rachel's hat she had a stem?"  Caleb responded like he always responds with "I know".  And I just smiled knowing that Isaiah was focusing on what she DID have, not what she was missing.  Later that day, I brought them swimming and Sam's goggles slipped down on his face.  I caught myself smiling again at how the strap was pushing his ears down and they were curved just like Rachel's....  even the defects I was afraid of before she was born have become a precious reminder of who she is to me.

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.

(Photo below! If you don't want to see it, turn back now....)

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.

This photo was only taken because we participated in the Duke University Anenecphaly Study that required a front and side photo without her hat.  I would have never taken it in that moment if not for that purpose, but I'm so glad I have this.  Still, this is not a 'real' picture because Lisa Borders edited it for me.  In real life, her neck up was dark purple and from her neck down was still pink.  I will probably never share those photos because it becomes too difficult to see past her death in those... Looking at these photos though, it still amazes me how much she looks like the rest of us.  Mama's mouth, Daddy's nose.... and the Spirit of our Lord.

I pray that sharing this does not come across as distasteful.  I think before now I always thought of it that way... even when the funeral home left with her, my instructions were "Don't let her hat fall off."  I've always felt so deeply that she needed to be protected from judgment.  And the thought of anyone looking at my daughter and saying "ewww" is almost too much to handle.  If this shocks you, I get it.  If you can see her beauty through her defect, thank you.  She is so very precious to me - and I might be biased, but I still think she looks every bit as huggable, lovable and cute as my other children do in their hospital photos.  I wish I could give her another squeeze and a kiss on her sweet cheeks.

♥ You shine like the stars pretty girl ♥

The buldge on the top is her brain stem and what kept her alive as long as she was.  Here is the diagram I found on line that helped me understand

I am so busy with her 2nd race that I probably won't be blogging between now and then...  I figure this is an appropriate post as I come up on the 2nd anniversary of her diagnosis.  I can hardly believe it's been 2 years since I first heard the word 'Anencephaly' - or how much has happened in that time.

Anencephaly occurs in 1 out of 1000 babies, but only 3 out of 10,000 live births.  95% of people who get this diagnosis terminate their babies - many times just out of fear and because they are misguided as far as their options and what the doctors say 'comes next'.  There is no known cause and no cure or treatment.  Many studies say that Rachel and her friends cannot see, feel, or hear.  They say you see reflexes and nothing more.  But I - and many other mothers - will tell you that is just textbook answers, which have no way to record what happens in the soul.  My daughter absolutely interacted with me while I carried her.  And I believe wholeheartedly that she felt my love.  I rest in the truth that today and every day forever, she will feel God's love to the fullest.

Anencephaly has rocked my world.  It has shaken me to my very core.  It has taken away one of my most beloved gifts.  I HATE anencephaly.

But my daughter.... she was worth every.single.ounce. of heartache.  She was a blessing and an honor to care for.  She deserved my love just like my other children and she got it, just the same.  Rachel Alice Aube can never be replaced - and I would never try.  She is beautiful and sweet and absolutely precious in my sight.

And my God.... He swooped me up as I walked out of that ultrasound, forgetting all my distance from him in the past, and loved me with a love so undefiled....He carried me with strong arms that refused to let go... He walked with me through the valley of the shadow of death, guiding me with the light of His Word and comfort in His promises and gave me peace in the midst of my storms.... and He is with me in the aftermath, patient and steady... calm and consistent...true and everlasting.

Anencephaly has no grip on me.  My Lord conquered the grave.  Rachel is alive, not dead.  And while I sit and wait, cry and smile, hurt and long for her... I don't do it alone and I don't do it without hope.  My God is with me - and He is stronger than any scheme of hell, even when I am very weak.

I appreciate your prayers as I come up on this anniversary and prepare for her 2nd race.  Specifically for my heart because I feel very sad and am missing her so much, for my mind because it's a lot to try to keep track of in my head and I don't want to forget anything, and that we will have a good turnout and be able to bless Family Builders with a nice donation in Rachel's honor to help her continue to leave her legacy and change the world..... I'll keep you posted on how it goes.  Thank you for walking this journey with me....even if from far away. ♥

2 Corinthians 4:6-12

For God, who said, “Let light shine out of darkness,” made his light shine in our hearts to give us the light of the knowledge of God’s glory displayed in the face of Christ.

 

But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed.   We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body.   For we who are alive are always being given over to death for Jesus’ sake, so that his life may also be revealed in our mortal body. So then, death is at work in us, but life is at work in you.

Romans 5:3-11

Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance;  perseverance, character; and character, hope. And hope does not disappoint, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.

You see, at just the right time, when we were still powerless, Christ died for the ungodly.   Very rarely will anyone die for a righteous person, though for a good person someone might possibly dare to die. But God demonstrates his own love for us in this: While we were still sinners, Christ died for us.

UPDATE - 6/17/15:  It has been a HUGE blessing to my heart to see how much this post is being shared recently!!  I looked and saw it's been viewed 118,00 times since I wrote it and was blown away!  It's like suddenly Rachel's story is becoming new news to so many people and for this Mama's heart, with all the things happening right now in our lives, this is exactly what I needed as I approach the 5th anniversary of when we got her diagnosis.  I appreciate all of your kind words more than you know!  Thank you for seeing how beautiful my girl is....  I'm so thankful that her legacy is staying ALIVE!!

I realized that since this post is now almost 3 years old, and the audience for this post has grown to well over what I ever expected, that new readers might not realize we are in the process of gearing up for Rachel's Race again this year.  Because I am pregnant again with our 7th baby, Rachel's 3rd younger sibling, I am doing a virtual race instead of a local event - this means that YOU can participate from anywhere!!   If you are interested in showing your support for Anencephaly Awareness and our mission and vision for helping families who find themselves on the same journey as we have in this virtual event, please check out our website here!! Baby Rachel's Legacy Race Info