All is Grace

Is it completely cliché to create a blog after receiving life-altering news? Probably, but I’m doing it anyway. I’ve actually been toying with the idea for months now. I’ve always enjoyed writing and my children are wildly entertaining. I’ve had the title “Sticky Doorknobs” picked out for a while. Up until recently my life has been like a comedy of errors and who wouldn’t want to laugh with me about it? But since our daughter’s diagnosis, I’ve found myself wanting to write for different reasons. To update friends and family about this pregnancy and our baby girl, to have a place to process my feelings and let others know how we’re dealing with all of this (because I know people are curious), but most importantly to allow God to use our situation to bring glory to His name. And so I will blog.

I’ll start with something that I think is important for people to know. For several months now, I felt that the Lord was preparing my heart for some kind of suffering. I knew it by the way the Spirit whispered to me as I read Ann Voskamp’s One Thousand Gifts, giving a name to what I now often refer to as the “hard eucharisteo.” I knew it through blogs I came across, outlining mother’s stories of grief due to children they had lost. I knew it through Scriptures that I’d been reading and testimonies that were shared personally with me. I just knew. And for the past several weeks, I felt like this suffering, this trial, would somehow pertain to this pregnancy. It wasn’t necessarily a feeling of dread, and it wasn’t something that I even shared with anyone. Just a knowing, a preparing of my heart that God was gracious in giving me.

So I knew that when I scheduled my 20 week ultrasound I would need to have my husband there with me. I knew we’d need to have a babysitter for the kids. And I knew as soon as the sonographer clicked on the screen and our baby came into view and her first words were, “Um…when was your last ultrasound?” that it had come upon me. I answered, “Not since I was seven weeks. There’s something wrong, isn’t there?” I know that ultrasound technicians are usually not permitted to give information about the scan they are performing. For whatever reason, however, mine immediately told us what was going on, for which I am grateful. “I’m seeing some incompatibilities,” she said slowly. “Her skull and brain have not formed properly. They’re… just not there. I am so sorry.” Onan and I grasped hands and began crying as she continued with the scan, apologizing over and over again to us. “It’s okay,” I told her through my tears, “God has been preparing me for this.” I silently cried out to Him. “This is it. The hard eucharisteo is here. Please give me your strength. Please help me to suffer well.” A few minutes later, she asked if we wanted to know the baby’s gender, and we did. “It’s a little girl,” she told us. I responded, “I knew that too!” Out of my four babies, this is the first time I’ve been right about the gender.

After the ultrasound was completed, we went into an exam room to wait for my doctor. My husband wrapped his arms around me and prayed Romans 8:28 aloud. A nurse came in to take my blood pressure and it was obvious that she had been informed of our situation. She was kind and quick, not saying much. When my doctor came in, she gently explained the diagnosis more fully. She told us that this baby would not live outside the womb, but would continue to grow as long as she was in utero. After quickly assessing our family medical history and asking about my folic acid intake (to which I answered that I’ve taken a prenatal vitamin every day for pretty much the past four years), she assured me that this was just something that happens quite randomly—not usually caused by any genetic problem and not something I could have prevented by doing anything differently. She presented us with our options (something legally required of her): termination of the pregnancy or continue to carry, probably to term, only to have the baby not survive for long after birth. She told me that we would meet with a specialist, a high risk OB whose office was right next door. She was going to get us the next available appointment, which happened to be 8:15 the following morning. We left, still crying.

I’ll never forget the car ride home. Honestly, I considered termination for a solid couple of minutes. It just seemed easier. I sobbed to my husband, but just as much to the Lord, “What kind of a choice is this? End the pregnancy when she’s alive or carry her for the next 4 months knowing that she’s going to die after I give birth anyway? How can He ask this of me? It’s just too much.” And it was. I had prepared myself for there not to be life. That was the worst scenario I could come up with. But this…this was just wrong. Unfair. Too much to bear. Thankfully, the Truth about who God is, what His Word tells me, gradually began to seep into my heart. Scripture that I had known for years flooded my mind, this time, with new meaning. As I recalled these verses and affirmed them, I felt a comfort, a sustaining peace deep within my soul that simply cannot be described. This, coupled with my husband’s quiet words, “I think we need to try to enjoy her as best we can for as long as we can”, changed my perspective. I knew that this baby girl belonged to the Father—and I placed her life in His hands. When it began, and when it will end, is up to Him. I saw the pregnancy–these next fleeting and precious months with her–as a blessing, rather than a burden.

The next morning Onan and I sat in the specialist’s waiting room, eyes bleary and heads throbbing from the lack of sleep and near endless crying. The mood in the room was somber and I realized how much I’d taken my three previous uneventful, low risk pregnancies for granted. The specialist we saw was serious, the all business type, which seemed fitting. He performed the ultrasound himself and told us, “The first question I know you’re asking is whether or not we can fully determine your baby’s condition. I can tell you with certainty that we can. We are looking at clear, diagnostic pictures here, and there is no doubt about what we’re seeing. The second question I know you’re asking is if this diagnosis will be fatal for her. It will be. It will be fatal.” He asked us into his office to discuss things further. For the first time, we were given the name of our daughter’s condition and I repeated it after him, scribbling it onto my notepad. “Anencephaly.” I had never heard of it. Once again we were presented with the option of termination. I explained that this would not be an option for us, and he was very supportive. “Many women choose to carry,” he told me. “We will treat this just as we would any other pregnancy. You will continue to see your regular OB and have appointments here as well.” He answered the questions I had written down on my notepad prior to the appointment. “Will she continue to grow normally while in utero?” Yes, because her lower brain is functional. “Will I be able to have a normal labor and delivery?” Yes, and the hospital is fully equipped for such a birth. “What is her life expectancy outside the womb?” Minutes, maybe hours, not more than a few days. He likened her being in my womb to “life support”—as long as she was inside, she would grow normally. As soon as she is out, however, that support is no longer in place. Without any upper brain function, she cannot live.

When we arrived home from the appointment I got online and began researching anencephaly. Thankfully, I came across an excellent site before I opened up the wiki page (which I do not recommend doing). Anencephaly info is dedicated to parents who choose not to terminate and is full of information regarding everything from the definition of this condition to what type of infant caps best fit the babies who are born with it. It also includes several personal testimonies from parents. This has been hugely encouraging to me.

The overwhelming support we’ve received from our friends and family is nothing short of astounding. Prayers, cards, email messages, meals—it all means so much. There are several women in my life who are able to identify, at least in part, with what I’m going through. My pastor’s wife lost a baby girl when she was three months old. One of my dearest friends gave birth to twin boys who lived for only four hours. I have numerous close friends and family members who have endured miscarriages. I know that God has placed these ladies in my life for such a time as this, and they weep with me as those who understand.

Just a couple more things that I want to make clear before I close out this very, very long first blog post. Onan and I wholeheartedly believe that God is fully capable of growing our daughter’s skull and forming her brain. He is Creator of the universe, God of miracles, healings, resurrections. We know that He is able to heal her, if He so chooses, regardless of any specialist’s diagnosis. But I want people to understand that if he does not, if he chooses instead to heal her by taking her, this is also a miracle. A life with Jesus, without this sin and sickness and sadness—a perfect and whole life in His presence—shouldn’t this be our hope for her? For all of our children if it is God’s plan for them? The Lord changed my perspective on death a few years ago and it is no longer something I fear for myself or for my loved ones who know the Savior. This life is a vapor. I know that I will have an eternity with my daughter, even if I will mourn not having her on this earth.

We’ve received several comments along the lines of “God is still good—even if it doesn’t seem that way to you right now.” While I completely understand the well-meaning sentiments behind such statements, I want it to express that we know God is good. Now more than ever. I’ve experienced the God of all comfort in a way that I didn’t even know was possible and have fallen more deeply in love with Him because of it. While I have no doubt that the hardest days lie ahead, that there will surely be times of questioning and great sorrow, I will not stop believing that God is good. That He is working all things together for my good. That he is sovereign, fully in control and loves me more than I can imagine. His plan is perfect and I’ve decided that it is far easier to trust him, lay it at his feet and give him my burdens rather than the alternative of worry, bitterness and anger. Please pray for me as I do this. I realize that what I’m saying won’t make sense to some people. If you don’t know the Savior, then I am certain this will sound like utter foolishness to you. That’s okay. I will continue to testify about what I know is Truth, praying that the name of Christ be magnified as I do so.

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  1. Tears are flowing now. What a beautiful post and beautiful testament to your strong faith. You are such an inspiration. Although I am personally against abortion, I can very well relate to the fleeting thought of it when I experienced a crisis pregnancy. Thank you so much for sharing. I will definitely be following your blog.

  2. What a wonderful blessing to have the faith in Heavenly Father to know, know without a doubt, that you will be able to spend an eternity with your baby girl. To know that your time without her on earth will only be a blink of eye. As I said on FB, enjoy your sweet baby girl. The first night, post diagnosis is the worst, things only get better from there. Again, hugs from a fellow ‘cephaly’ family.

  3. Leah:) I look foward to following your blog. Reading this has touched my heart in such a way I can’t even describe. It has given me an understanding to some stuff that I’ve been going through and how God works… Wow! It is so amazing of what a wonderful Father we have. He is going to use you and that precious little girl in so many ways, and I could tell you He already started with me. I have been around these situations many times being that I worked for an OB but never witness the faith and glory that you are giving to our Father. Your family will be in my prayers and thoughts:) and give the kiddies a big kiss for me

    Love you Leah and Oni

  4. im so glad you are sharing your eucharisteo story with us. you are so honest and beautiful. God is ALREADY using you and your family. praying for you daily. i love you “sticky fingers for the rest of the day” and all.

  5. Thank you for this Leah! Know we are praying daily for you and your family. All truly is grace!

  6. followed this through the zionica website. a friend of a friend here in texas recently recieved this same diagnosis. she has blogged about her journey- if you are interested in reading her blog, please contact me through my blog. praying with you as you travel through this hard eucharisto -with grace.

  7. Dear Heavenly Father up Above please protect this family that you so love.Keep them close and keep them near so that they will have no fear.Also as it says in Matt 18:20 “I also tell you this: If two of you agree on earth concerning anything that they ask,it will be done for them by My Father in heaven.For where two or three are gathered together in My name,I an there in the midst of them”
    So Lord I’m here among all these others asking that it be Your will that will heal this precious baby girl and that all will see the miracles that will come from having the faith and trust in Your Promises,I pray this in Jesus precious name,Amen!I’m asking all others who come here to add an amen to this to bring us all into agreement… with Christian Love,Tammy

  8. Leah and Onan,
    I feel for you both as you travel on this journey. You have shown so much maturity in Christ in your first blog. I appreciate your words that are so encouraging to others during your difficult time.
    Sometimes I don’t think we fully grasp what Jesus meant about sending The Comforter–when He talked about the Holy Spirit. It is during these valleys in our lives that we sense what He meant and actually experience the comfort only Christ can give.

  9. Leah, what a beautiful word you’ve written. Being one who has read Ann Voskamp and am reading it again, I totally understand how you’re embracing this. Such a miracle God is doing in your life as well as your sweet babe’s. Your faith is a testimony to me and I am humbled by it and in awe of it. You and Onan and your families will continue to be in our family’s prayers.
    Michelle Richards

  10. Leah,
    You might not remember me, but I have gotten to meet you once or twice through Bonnie. As soon as she posted about you on her blog today, I came over to your blog. Thank you for writing your thoughts and for being so transparent. May God continue to draw you close to Him and allow you to experience the peace and comfort that only He provides. Praying for you!

    Tara (Baker) Dew

  11. Leah- I will be praying. I’m so glad you started a blog. Your writing is beautiful and your faith is inspiring.

    Samantha Krieger (Edwards)

  12. Charis E

    Thank you so much for this. Our first baby was diagnosed with anencephaly 2 weeks ago (at 10 weeks). I’m praying that God does His will in our families’ lives through the unique gifts He has given us.
    Charis E.

  13. Leah, just reading this first post I can see one of my prayers for you and Onan were answered. I can see that your understanding of the Father’s plan for his children is giving you comfort. I so identify with what you said about those whisperings preparing you for something. It was in my darkest moments when I’ve felt the Spirit the strongest and known that He lives and loves me and because He lives I can survive those dark times of trial.

  14. Praying for you. My heart breaks reading your words. I hope your hospital has also made you aware of now I lay me down to sleep photography, if you desire it. God bless you and your family!

  15. Anonymous

    I just read your blog and it’s taken me back to a hard time in my life a I had a miscarriage after 4 years of trying to get pregnant. You have been able to put into words the beautiful and complete comfort and peace that the Lord provided me during that time of beauty and loss I look forward to meeting my baby in heaven one day and I now look on that brief pregnancy (3 months) with some fond memories just as I remember the pregnancy of my now 7 month old. I will pray for you guys.

  16. Edna Cadavos

    “I do not ask my cross to understand,
    My way to see–
    Better in darkness just to feel Thy hand,
    And follow Thee.” …..we are praying for you all.

    Pastor Dan, Edna and the Cadavos family

  17. Anonymous

    Leah and Onan, I am a friend of the Elston’s. I read of you in Caleb’s Caring Bridge. I just read your blog. What wonderful Christians you are. That is how we get through tough things on this earth. I am 62. 5 years ago, something happened in my life that I thought was the most unbearable thing EVER. I now know God’s plan was perfect. That has enabled me to totally walk through whatever happens with faith, knowing God has His unseen purpose. Perhaps all your purpose with Elizabeth Grace is to give her a gentle home till she returns to God so that you can help others who might end up lost because of this occuring in their lives. We do not know and that is the beauty of it. God bless you. I admire your courage and love of God. Take care, Donna

  18. Anonymous

    I do not know you but found your blog through a friend on Facebook. What an amazing God-filled testimony of walking by faith and not by what we see. I am praying for you today and in the days to come – May you continue to feel His presence surround you every step of this hard journey.

  19. Anonymous

    As someone whose job is helping to save babies, this breaks my heart. I am amazed at your steadfast faith, and wish that I could see things as you do. You are the Christian that I would like to be.
    When I was pregnant with my 2nd child, my 20 week ultrasound put me at a higher risk for a down syndrome baby. I was so scared. My doctor offered me an amnio to determine for sure even though his gut feeling said that there was nothing wrong. With the risks involved with that at 21 weeks, I chose to have no further testing done. After all, I was going to love this baby no matter what was wrong with him.
    I pray that your faith remains strong and that when your baby girl enters the world, that you envelop her with love and absorb everything that she has to give you. She will be a blessing no matter how long she is here on this earth. 🙂

  20. Anonymous

    I don’t know you but I found out about this situation through a friend’s posts on facebook. I feel identified with your situation. I had a miscarriage a few months ago. It was so painful and it takes a while to get over it. I don’t know if I am completely over it yet, but I agree that God shows his love and mercy in VERY clear ways when we are experiencing pain and grief. I mean, very clearly. Praise the Lord! I will continue praying for you, Leah, and for your husband and kids. xoxox

  21. Thank you for sharing this. You are a strong and beautiful mother and I am grateful for your testimony to God’s goodness and grace. Bless you and your family.

  22. You heart for God is amazing testimony of love…. Praying for you, sweet one. Know that you are in the palm of His hand and your heart is protected by our gracious father..

  23. Anonymous

    “Please help me to suffer well”……..what glorious words!

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