Sunday, October 21, 2012

Monsters or Miracles?

Disclaimer: This is more "rant" style than any of my other entries. There may be people reading this blog that feel the same way as the man I am about to quote below. Before you read, I'd like to kindly ask those of who feel this way to refrain from sharing those opinions. This situation is incredibly sensitive for me, and I am not looking to be swayed in my decision. This blog is for me to share my feelings, fears and thoughts, and I'd like to keep it that way without turning it into a debate forum. I thank you sincerely for respecting my feelings on this.

The Internet can be a wonderful thing. It allows us to stay in contact with family and friends around the world. We can meet new people with similar interests in online groups and clubs. Information on any topic is literally at our fingertips. What do you do when you have a question, about virtually anything? Google it.

I am a researcher. I am interested in absorbing as much knowledge as I can about topics that affect me and my life (except politics... I really couldn't care less so I choose to ignore it). These last two weeks, the Internet has been my lifeline. It was given me the ability to reach other mothers that have been through the hell of a poor prenatal diagnosis, and it has allowed me to pick up every bit of information about Leila's condition that I possibly can.

With my incessant longing for more knowledge, I've also come across the ugly side of the Internet. The bullies, the bashers, and in my particular situation, those who believe my baby is a "thing" and doesn't deserve to be carried with the possibility of being born living. On one blog, which discussed the topic of whether to abort a pregnancy with the diagnosis of Anencephaly or carry to term regardless, what I would consider a very ugly person wrote the following:

"You do know that any infant born with Anencephaly will never live a full life, right?! In the hefty case of anencephaly, I would strongly suggest an abortion before the "child" can be born. Anencephalic newborns almost always cannot hear, see, taste, smell, or feel pain, because THEY ARE BORN WITHOUT A FULLY FUNCTIONING BRAIN. I can only imagine the sheer terror, disbelief, disgust and sorrow that anyone has had to go through when giving birth to an Anencephalic baby. They just look like such vile creatures, and to call these things "fully-functioning children" is just wishful thinking. These newborns usually die within 24 hours after birth. Also, just looking at the baby with its exposed brain and bugged-out eyes makes me want to vomit... have a nice day."

Ouch. When I read those words, I felt like someone grabbed my stomach and twisted it into a knot. The first part of his statement is true: Anencephalic babies will indeed never live a full life, the majority do not have senses or feel pain, and they are born without a fully functioning brain, if any brain at all. But to call my sweet baby a "vile creature that makes you want to vomit"? To assume that when I give birth to my daughter, that I will be disgusted and terrified by her? Are these babies monsters? Are they so horrid and ugly that they don't deserve as long of a life as possible? Are they like injured horses that need be shot because they are of no use anymore?

I do understand the choice to terminate. I really do, and I would never judge a woman for making this choice. What I am fairly certain of is this: a mother that chooses to end her pregnancy early is not doing it out of fear of what her child will look like. She is doing it preserve herself, her mental and physical health, to allow her child to go to heaven sooner so as not to prolong the inevitable, and begin to heal. These mothers love their children just the same, but out of the two incredibly difficult choices (ones that I pray none of you ever have to make), they chose one road while some of us choose the other. Neither is wrong. Neither deserve such ugly, hateful arguments against them.

In conclusion, I want to respond to the gentleman I've quoted here in my blog rather than the forum where it was originally posted, because I like to avoid conflict. He doesn't have to see my response, and I don't have to deal with the backlash of his subsequent rants. I can still get it out in writing, and sleep soundly tonight knowing that I spoke my peace:

A BIG FAT MIDDLE FINGER TO YOU, SIR. Does it disgust you to look at yourself in the mirror? Because your moral deformities are horrifying. Do you feel that children born with physical abnormalities that are given the opportunity to life full lives are ugly and vile and that their parents are disgusted with them? My daughter may not look like a normal infant, but she is beautiful to me and to all the many people that love her. I will look past her imperfections and see the life I created with the man I love and be proud to say I gave her as much of that life as God allowed. I will see the life of a little girl that has touched so many people in her short time with us, and I will be thankful that I did not take that life away before it was her time. Do you see a term that has been repeated in this response multiple times? Life. She has been given one, regardless of how brief it may be and how different she may look. She's a miracle. Have a nice day.


  1. I can't begin to imagine why someone could spew so much hatred about a baby. It makes my stomach feel just the same way as yours and reminds me of the Atheist forum on this topic that Google led me to the other day.

    Like you said, termination wasn't an option for us but I could never judge a mother who chose that option...and it baffles me how so many still choose to judge those of us who will carry our babies to term - neither choice is easy and wouldn't it be nice for folks who couldn't possibly understand to just keep their mouths shut if they have nothing productive to contribute??

  2. People are freaking disgusting! I'm literally crying here at this horribleness of this person. How dare he? I pray he's never in a situation where he becomes the father of a special needs child who is disfigured due to their disorder.

    Please, ignore the stupid people. Unfortunately the internet allows them unhindered access to the rest of us. And more often then not, those same stupid people feel the need to harass others. 99% of them wouldn't have the balls to spout that BS to anyone's face. So, they sit back in their mom's basement and start crap. Why? Because they can. It's sickening that one would stoop so low just because the ability is there. It says entirely too much about our society.

    Leila IS beautiful, Leila will be perfect when she's born, because she'll be exactly as she was supposed to be. And Leila will only know love. And for that, she's one of the lucky ones.

  3. I loved your response. Good for you and shame on him. What he said was rude, crude and just heartless. I can't help but agree with you that he must be an ugly person because personality will always shine through more than physical appearance which dwindles with age. I especially love how you wrote about life and how your baby has that life regardless of how short.

    This blog got enough of an emotional response out of me to make Chris go crazy and bump around. It's like he's cheering you on to. :) Stay strong mama.

  4. I work with a nurse midwife, and we have had 3 anen babies. My dear childhood frien has recived this diagnosis for her baby. We were fortunate that all 3 mothers carried to term and all 3 babies were born living. Their lives ranged from 54 minutes to 2 days, but they all LIVED. Each one of them had a personality and I have been so blessed to be apart of that. It was so comforting to me to tell my friend how cute these children were, not scary. To me, their eyes are the cutest things. I don't know you, but I stand beside you with 2 birds up to that ugly man. I wish you the best pregnancy ever and the gift of time with Leila. She will be stunning and gorgeous.

    Stay strong. As you said, while the internet has some ugly people, it can also provide you with a wealth of information and support.

    1. Thank you so much for sharing, Rebecca. The day of Leila's diagnosis, it hurt so badly to look at photos of babies with her condition, only because it was so real and heartbreaking. But the more I processed, accepted and began to feel more and more love for her each day, I see that these children are perfect in the way God made them. They are sweet, innocent and know nothing but love. I cannot wait to meet my little girl, and I pray that she pulls through on her day of delivery so we may hold her while her heart beats.

    2. I think maybe the best definition of living a "full life" is being loved the way you love Leila. I know how hard I've worked, for so long, to try to live into the fullness of life, in spite of having never been loved that way by another human being. I believe this is the most important part of God's perfect design for our life, and you've already fulfilled that.
      It also means a lot to me that you're living out the reality that having a brain does not make someone a person. Because I lived for too long in childhood feeling as if there wasn't anything valuable about me except the brainy part. And I was horrified when my son came home from kindergarten with his "All About Me" project and I saw that for "The most important thing about me is ________." he had answered "I'm smart." I told him most passionately that is NOT the most important thing about you; if there was an accident and your brain got broken and you were not smart anymore, you would still be so precious to us... Easy for me to SAY, but you are living it so fully and beautifully. And that means a lot to me.

  5. Sweet Em...I am praying for you, for your husband for your children and most of all your gorgeous precious AMAZING little angel you are carrying. She is a gift from God and ONLY a mother can understand that. SHE is precious and just as the bible says fearfully and wonderfully made. Cherish every kick, every moment and as for us here we are ALL lifting the big bird up to A-hole no name who needs a good swift kick in the nether regions. I don't know you (except for slight interactions on our SS team!) but I adore you. You are strong, you are amazing and you are couragous. Much love to you and Leila <3

    1. Thank you so much for your prayers and support Aleisha, as well as continuing to follow our story. I've learned that people we don't know too well have the kindests hearts and I have made some wonderful friends in the last two weeks because of it, so I truly thank you for reaching out <3 As for the closed-minded jerk, he'd best stay hiding behind his computer screen, cause Team Leila is ready to fight!

  6. Such a joy and blessing to get a chance to meet you today, Emilee! What a gracious and courageous woman you are. May the fullness of God's grace, power and victory work in you as you pray for your precious daughter. God is big in hard stuff. And CLOSER than ever. May you and your husband experience, know and be sustained by God's grace.