The Condition That’s Incompatible with Life…
Acrania-Anencephaly…
I’ll need to run and hide after this. The feeling that remained with me for hours after posting on Facebook. Now, with a little more courage, I hope to reach the larger masses by sharing here with all of you.
This is hard. Really hard. I debated. The internal battle continues…It’s a taboo subject. Am I️ oversharing? As a society, “WE” don’t talk about these things. But this, THIS is something my heart is beating fast for. Something my gut is telling me I need to do. So, here it goes…
Let me take you back a little bit.
Oh sweet summer! A picture perfect night. Joel and I️ had a great time with two of our favorite people and their sweet babies. So much so that we went home and made our own baby. Ooops! Timing wasn’t exactly right, but is there ever a perfect time for anything?
We were ecstatic and felt extremely fortunate. Fast forward a short while and I lost that pregnancy. It was early but I was crushed. Ahhh. Lightbulb moment. So THIS is how other women feel. Officially part of the club you never wanted to join.
In your heart, you know you’re not alone because the stats are 1 in 4, but no one ever talks about it. WHY? A looming cloud of sadness hung over our heads. We dealt with it. We found a way to make sense of it. We had faith we’d be given a second chance.
Fast forward again….
September 15th. The best day of my life. TWICE….
The day I married the man who I would be lost without and exactly one year later, on our 1 year anniversary, we got our second chance! I recorded Joel’s reaction so that we could one day share that joy with our child. THIS was the best 1st anniversary present EVER. Look at how much we loved you from the start, sweet baby!
We experienced a loss.
We learned from it.
We grew as individuals and a couple.
It strengthened our marriage.
It created a much stronger sense of empathy and compassion for other couples who have experienced the same. THIS has to be the baby we get to keep. The one that God gives us to care for. The one we get to call ours.
We made it to the second trimester! Phew. Huge relief.
Another appointment to attend….a day that changed our lives forever.
The feeling in the room was off. The doctor didn’t speak. Until she did. I️ asked, “Is what you’re doing normal?” Her response took my breath away. “No Courtney, it’s not. I’m going to tell you what’s going on in just a minute.” A million things ran through my head. I’m pretty sure I stopped breathing…
Your baby has Acrania-Anencephaly. A rare, random abnormality where the baby’s skull doesn’t develop.
I can hear her words over and over again in my head “This condition is incompatible with life.” Pause.
“Do you understand?” Joel and I️ locked eyes. The most surreal moment of our lives. Horror, fear, devastation. I couldn’t think. I️ DON’T understand. How is this happening? The doctor apologized and proceeded to provide us with “options.” Options that no parent should ever have to face.
All options are a death sentence.
For our baby. Which do you choose?
HOW do you choose?
No, no, no. Please God, no. This only happens in the movies. Or somewhere far, far away on the internet. This didn’t just happen to us. This isn’t our reality. Pinch yourself. Feel your tears and those coming from your husband’s eyes as the doctor gives you some time alone together. This is as real as it gets. Our hearts….our souls…shattered.
Reality sets in. God needs this baby back too…
While at a follow up appointment, we found out that another local couple experienced the SAME diagnosis a week before us.
1 in 1000. A small scale lottery that nobody wants to win. Not you. Not them. Not us. Not anyone.
I might know them. YOU might know them.
As the days went by, we learned that more couples, some we know, some we don’t, have experienced the same. Presented with the same “options.” Literally, just minutes ago, I found out about a woman who committed suicide after losing her baby to anencephaly. So, how do I keep this to myself? I don’t.
My hands shake as I type. My eyes well up. I take breaks when I need to. But I get through it. Because THIS is what’s right. These babies deserve to be honored. And even though our biggest fear came true, our second biggest fear doesn’t have to. Our baby will not become “just another statistic.”
This is our story. Our life. Our BABY. I think that’s what a lot of people don’t understand about this taboo subject. It’s not “just a pregnancy loss” which believe me, is devastating enough.
The weeks don’t mean what they used to – but you keep counting anyway. The due date you once looked forward to celebrating now prompts an indescribable level of pain and anxiety.
How do you get through?
A lost BIRTH day, a lost childhood, lost memories you’ll never get the chance to make….a lost LIFE. A loss that I hope you never have to understand. One I wouldn’t wish on anyone….
Please, don’t whisper about this. Share freely. Share kindly. Share without judgment. Share with love in your heart because you might be helping someone else. Because we need to be better to each other. So much better…
To those who can relate to this in ANY way – I don’t know your story – or your exact situation – and you too, may have felt that “THIS” isn’t something you can talk about.
What I do know is that my heart breaks alongside yours.
To the couples who have been presented with the unthinkable, as we were, our hearts are tied to yours. Connected in a way we wish they weren’t. I want you to know – we felt so alone on that awful day. But quickly learned that we’re not. And you aren’t either.
My hope is that our story brings some comfort, a little strength….at the very least, some form of validation. And to the dads who hurt so much while trying to be strong for their wives, I see you.
Let yourself hurt. To my amazing husband, the words from our wedding song never meant more, “You and me together, we can do anything, baby.”
This picture of us was sent to my best friend as we waited in the waiting room before the appointment that changed all of our future plans. The appointment that changed everything. Today I will be thankful for that moment. For that joy.
To have been given the opportunity to experience THIS love...because that can never be taken from us. And because I learned that a mother is not defined by the number of babies she holds in her arms, but instead by the amount of love she holds in her heart.
My husband. My rock. Truly the most amazing man I know. As he held my hands in his, he told me this happened to us because we’re strong enough to get through it. Because it will make us better, not bitter.
Because we will make good of it. And because we will always be grateful. And ya know what? He’s right. We’re grateful for our friends and family who have shown us more love and support than we ever imagined.
We’re grateful for life’s experiences…they have shaped us and given us an appreciation for the GIFT OF LIFE like never before.
Cherishing Our Baby, Sweet Serenity
We are so grateful for each other and that our sweet baby Serenity gave us the strength to share with all of you. And of all the days of our lives, we will always be MOST grateful for September 15th…..
TWICE ❤️
1. What have you accepted within your life, physically and/or mentally? Additionally, what are you still working on accepting? Now, we’re not talking about resignation, rather stepping into, embraced, and owned.
I have accepted the fact that we lost our daughter. She’s gone and we never got to meet her. I’m working on finding a way to be at peace with that. I experience sudden moments of serenity; where I can intuitively feel that our sweet girl wasn’t meant for this earth…but just as quickly, those moments escape me and I am left in a place where I feel paralyzed and stuck playing a game of 21 questions with The universe and God.
2. What have you learned to appreciate about yourself and/or within your life, physically and mentally? On the other hand OR in contrast, are there elements of who you are that you’re still working on appreciating?
I’ve learned to appreciate my ability to see the silver lining; however, I struggle with being human and not always being able to find it. I can be really hard on myself when I’m feeling down.
3. What is one of your most rewarding achievements in life? Tell us not only what makes YOU most proud but also share the goals and dreams that you still have.
This is a tough one. I think making the decision to step outside of my comfort zone and become an entrepreneur is at the top of my list. I went against the grain, I worried about what people would think, I didn’t have the money, I was SO UNCOMFORTABLE – but I did it anyway.
Right now, my biggest short term goal is to find the inner strength to start a family and to make sure I’m in control of the time I get to spend with my family when we do. Entrepreneurial life is going to allow me to never miss a moment.
4. Of course, we all have imperfections, or so we think. In truth, we are all perfectly imperfect. What are your not-so-perfect ways? Likewise, what imperfections and quirks create who you are–your Identity?
I am the biggest scatter brain. I mean, the BIGGEST. Don’t expect to have a conversation with me and think we won’t have five conversations within the one that we started with and think I’ll ever be able to remember where the conversation started or what we were trying to accomplish.
Still with me? I’m the girl who talks to anyone, laughs with strangers and knows that the glass may not be full or empty – but there’s always water in it.
5. “I Love My…” is an outlet for you to appreciate and express all the positive traits that make you…well…YOU! In fact, sharing what you love about yourself will make you smile, feel empowered, and uplift your spirit and soul. (We assure you!) Therefore, Identity challenges you to complete the phrase “I Love My…?”
I love my heart. It’s big, it’s pure, it’s giving and with every step I take, it beats right alongside me with the greatest intention. It’s something I was born with but also something that has the capacity to change.
Despite the experiences that some may assume would lead to a hardened heart;I am conscious of ensuring my heart continues to pour out love and compassion; as a woman, a friend, a stranger, a wife, a mother to an angel and a mother to be.
Every time I read this article, I cry and honored you shared it with our community!