“Why is she carrying her?”
It is a question that has been asked of many friends of mine as they have shared our story, but I have not been asked personally. Yet, it has made me think “How would I respond to that?” 95% of women who have babies diagnosed with anencephaly terminate their pregnancies. 95%! It is no wonder that we rarely hear about this condition. I do not write to place judgment on those 95%, but to create awareness that there is another option. I believe when it comes to medical conditions that an unborn baby has that are deemed “terminal” people are greatly misinformed as to the beauty and joy that can come from carrying a child that will likely die. I am currently 3 weeks away from my due date of our precious daughter, Sophia Kyla who is not expected to live. And I write below our story of why we chose life for her so that by sharing her story it might give hope to those who are in the process of choosing themselves and to speak into a greater reason for choosing life. Every child, unborn or not, has a voice. Will we let their voice be heard? Will we let their voice impact the watching world? Giving Sophie a voice over the past 4 months has impacted the lives of thousands… and she is not even born yet. So though sadness and grief surround us always… there is a beauty of the Joy and Celebration of her life mixed in the sadness. Joy and sadness can be a beautiful thing. Here is our story.
“Your child has anencephaly (a condition where your babies upper brain and skull have not developed) and unfortunately this is not curable. There are neural tube defects that are lethal and ones that are not lethal. Unfortunately anencephaly is lethal, incompatible with life.” Kevin and I sat there in the ultrasound room tears rolling down our faces as we internalized the words the Doctor was saying to us. We had never heard of this, or thought that there would be a possibility that something could be so wrong with our daughter that would make her “incompatible with life”. I knew what was going to come next out of the doctor’s mouth and either stopped him mid-sentence or thought about it. “You have a couple of options”. “No, please don’t say the first option, I know what it will be and we will not choose it” I thought silently. “You can terminate your pregnancy since your baby won’t survive more than minutes once born…” Without even looking at Kevin, or discussing our choices I said “No, that is not an option for us”. The Dr. proceeded to let us know that under Florida law you can terminate a pregnancy before 24 weeks (we were at 20 weeks) or we could continue the pregnancy. Perhaps thinking we needed time to discuss he left the room, there was no discussion, only tears, we would carry her. She was our daughter. She was ours. She was ours the moment we found out we were pregnant and finding out she would not live would not change that. As the dr. came back Kevin asked if there were any risk to me in carrying her. A slight fear came into my mind at that moment of what the answer to that question would be. How could I continue to carry her if my life were at risk, Oh Lord I would have to trust you, termination is not an option. Thankfully, there was no risk and that was a fear I did not have to face. I’d like to think we would hold fast to our decision to continue if that was the case, but without having faced that I can’t speak to that. I know that some women our faced with that question, and I’m sure there is great fear in knowing how to move forward. One thing I do know is that our decision to carry our daughter is rooted in a deep value and belief in where life originates and who it originates from that is the foundation and reason why we didn’t even have to look at each other to confirm our decision to continue this pregnancy.
In our society there is great difference of opinion over when and how life begins. But the value of life, what is life, and who gets to have it and who does not can never be determined by a government however many laws are in place. Perhaps we are under the illusion that the government can define our “rights” or “non-rights” in that category but they cannot. We get our truth about life somewhere and that truth will dictate the way we value or do not value life. Government laws, medical findings may be ways that we try to justify our choices, but we are responsible for the choices we make. Deep inside, our choices come from what we believe about life and who is the author of life. Medically speaking many doctor’s would say that our little girl is by all definitions “brain-dead”, thus justifying taking her off my life support. The problem I find with that justification is that her life support is not artificial, it’s My life. Her mother’s life, sustaining her life. One heartbeat sustaining the heartbeat of another, one life sustaining another’s life.
But there are 3 other greater reasons I find for choosing life for our daughter. The first is found in answering the question “Who is the author of life?” I believe God is the author of life, the Creator, and the perfect Creator. It is tempting to ask the question in our situation “Well, then God where were you between day 21 and 27 when her neural tube was supposed to fully close and enable her brain and skull to form?” But if you believe in God, you have to believe that He is perfect, all knowing and fully present. Well maybe you don’t have to believe that but to be honest, could He really be God if He wasn’t all those things? I’m not going to go into a theological discussion of who God is and why He exists but the reality is there either is a Creator or there isn’t. It doesn’t work for those who believe we just evolve and are a product of the natural evolution of life and those who believe that we are Created by a Divine Creator to both be right. One is right and in this relative society as unpopular as it may be to say it, one is wrong. There either is a Creator or there is not. And if there is, than we have to answer to Him for how we deal with and respond to life that He creates. I believe, for reasons I could fill pages with, that there is a Creator, God, who is the author of life and is the only one that can take life. The 2nd reason, is God’s Word. I believe the Bible is God’s word to us, fully and complete. Again, it either is God’s word or is not. We cannot pick and choose the parts we think are or are not. And if it is God’s word than it affects how we view life because it speaks to life. There is a passage that has become especially profound to us on this journey. Psalm 139: 13-18 “For you (God) formed my inward parts; you knitted me together in my mother’s womb. I praise you, for I am fearfully and wonderfully made. Wonderful are your works; my soul knows it very well. My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth. Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them. How precious to me are your thoughts, O God! How vast is the sum of them! If I would count them, they are more than the sand. I awake, and I am still with you.” Laced throughout that passage is the overwhelming thread of the voice of a God who madly loves His creation. And as I’ve thought more fully over the past months of how I would answer the question “why do you carry her?” my response, rooted in my beliefs extends to my experience of a God who deeply loves me. Love. That is why I carry her. Love. This is not the “follow your heart and your feelings” kind of love, or the “love that is based on whether the person loves you back” kind of love. This is the kind of love that is unconditional, giving of your total self regardless of what you get or don’t get in return, regardless of what it may cost you. This kind of love is what real love is. There is a definition of love described in the Bible that says “Love is patient and kind. Love is not jealous or boastful or proud or rude. It does not demand its own way. It is not irritable, and it keeps no record of being wronged. It does not rejoice about injustice but rejoices whenever the truth wins out. Love never gives up, never loses faith, is always hopeful, and endures through every circumstance”. The Bible also says that “God is Love”. He is the very definition of love in its truest form and He demonstrated that Love for us when He sent Jesus, His son to come to earth to pay the debt we could never pay for all the wrong we had ever done. He took it on Himself, laid His rights down to give us the chance to have Life, to have Love. His Love. And anyone who says “Yes, Jesus… I accept your payment on the cross for all the wrong I’ve ever done” enters into a relationship with the God of the universe. Kevin and I made that decision, separately many years ago. And as we’ve grown in a relationship with God we’ve discovered and experienced His love for us in such incredible ways that it compels us in the way we live. We cannot love like Him apart from Him. “We love, because He first loved us.” This is the kind of love that compels us to carry our child. If I’m honest, there were moments in that room at the Dr. ‘s office and the following week where I thought at times it would be easier to let her go now, to be able to have another child sooner, to not have to go through the discomforts of pregnancy for the next 5 months knowing I may just have moments with this child. Yet all of these reasons are not rooted in love. They are rooted in self. And I could not entertain those thoughts for long because I deeply love Jesus, and I deeply love my daughter in ways I cannot even put into words. I wonder, if people knew this God of Love, if people (myself included) experienced love in the way God intended and gave it in that same way… I wonder if more women would choose life for their unborn child? Because what may be the hardest decision you have to make… to carry a child, whether wanted, unwanted or diagnosed to enter the world in a way you could never have imagined… could turn out to be the most beautiful journey you could embark on. Kevin and I don’t love perfectly, but we are learning love in a whole new way through carrying Sophie. She is teaching us about how great our God is, how loving He is, and what it looks like to value life and every moment in ways we never would have imagined possible. God gave Sophie to us, and we have allowed Him to use us, her parents, to give her a voice.
What voice will you give your unborn child?