July 22, 2017
Hello dear reader,
I am writing this blog for selfish reasons mostly. Reasons like memories and self expression and healing and coming to grips with life’s reality. In a less selfish sense, I also hope and pray that my words could be a source of comfort and a sense of community for someone else struggling with the unthinkable. In times of pain it can be natural to bottle yourself up and feel so alone and deserted. At least that is my tendency, but perhaps not a healthy one. I have recently been very encouraged by reading the words of parents who have lost their precious baby to dreaded diagnosis’ that seem foreign and frightening until they greet us face to face. I have read their journeys with tears streaming, and then my heart raced as they triumphed over what seems impossible to face- as they find beauty in the sorrow. I don’t consider myself to be any kind of great spiritual person, much less a counselor in trying times. I do think that an honest experience shared can sometimes be the most help. When the raw, ache of emotions can flood out, the aftermath can be just as raw and real and beautiful and true.
I am 20 weeks pregnant with our third son, Ethan Lion. Ethan has been diagnosed with a neural tube disorder called Anencephaly. It will mean that his skull will not form correctly, leaving his brain tissue exposed to the amniotic fluid in utero and over time dissolving part or all of it. Babies with this disorder either can be born sleeping or live just minutes or hours. We have been reeling ever since we heard the word from our doctor. Its hard to describe the feeling, unless you’ve experienced it. Humbling, time stopping, and world shattering are phrases that come to mind. I knew, and Josh knew, that as long as we knew Ethan wasn’t in pain (which he isn’t) we did not want to end Ethan’s life, even though the termination of our pregnancy was continually suggested. We didn’t create his soul and we had no right to take it because we weren’t happy with the result. There is no real danger to the mother or the baby in carrying your anencephalic baby to term, it is just something that is not often done. After learning his prognosis it has been just over a week carrying Ethan in my womb, and I can see why the majority would think that ending the pregnancy might make it easier. No mother is born equipped to deal with death and loss of this kind. The daily reminder of what is to come and what will never be is really too much to bear at times. It’s only my trust in the One who created me that will ever get me through.
I am ashamed to say that I am very much a realist and as much as I appreciate trusting in God’s ability to do miracles and optimism, a large part of me knows I will soon be losing my baby. We live in a broken world where things are not fair and where suffering is the norm instead of the exception. Hope in our situation means that I choose to believe that God will walk with us through this and that I will be able to use this to help others in small ways. I will be able to donate my breast milk to babies who wouldn’t have it otherwise. I will be able to empathize with other families who have suffered through a terminal diagnosis of a loved one and hopefully bring comfort to them. If Ethan makes it to term, there’s the possibility that after he passes he will be able to give a life saving organ to another baby who would die without that organ. It might seem morbid to think of these things but the realist in me wants to look reality in the face and figure out how to see some light in the darkness. If Ethan lives through this then I will be eternally grateful for the miracle and be more overjoyed than I can imagine. I know God can do anything. I also know that we humans are weak and fragile and the bible calls us dust- and that sometimes things don’t make any sense or fit our perfect picture. I choose to hold on to the only thing I know and that is that God will walk us through this and He will be the only thing that can sustain us through this pain.
I need Ethan to be remembered. I need him to stay in the hearts and minds of the people who care so that he can continue to exist beyond his short life, and live beyond in our love. I am blessed with carrying him now as he grows. Motherhood is a crazy beautiful thing. Every kick and little movement is so cherished. I feel so relieved when he decides to move around when I eat something cold or sweet, or even when his big brother Noah accidentally snuggles me too tight around my belly. We know that Ethan’s life here with us will be very short. Forever too short and until our family leaves this earth we will long for more time. There are so many unknowns and we feel like we are hoping for scraps and bits and pieces of what we would have had with a healthy babe. Will we get to actually hold him while he’s still breathing? Will he be able to hear our voices? How can I comfort him if I can’t nurse him? Will seeing him make it so much harder to say goodbye? So many unknowns and so many torturous questions.
I read something that speaks about this kind of hurt and I think it is so beautiful. “Grief is not a sign of weakness or a lack of faith….it is the price of love.” We love you so much Ethan and that’s why we hurt so bad. Every day your momma gets to spend with you is such a gift and we will keep praying for the strength to be present and purposeful in our lives while we wrestle with our broken hearts.
With love and thank you for reading,
P.S. Your prayers are so valuable so please send up a good word for us. Even though in the past I have not attempted to cultivate a community outside my bubble, there’s no better time to start than now. If you have read this and you are going through it, whatever “it” may be, please know that I want to pray for you too. If you aren’t the praying kind that’s ok, I still would love to hear whatever you’d want to say. I will try to continue to update this site with our progress as we get closer and closer to holding our little guy. Thank you