A lie circulates conversations in an effort to make people feel better. We’ve all said it, but let me boldly tell you, it is a lie, and we need to stop saying it. “God will not give you more than you can handle.” Yes He will. And He does. Unfortunately, we learned this the hard way, but I am forever grateful for realizing the truth: He longs for us to abide in Him, and oftentimes, the road with Him means giving us more than we can humanly handle.
In March of 2016, 10 weeks pregnant with our 3rd baby, we received a call – the call – that gave us more than we could humanly handle. The call to forever change our lives and our hearts.
My OBGYN’s nurse called and two hours later, Kelly and I sat in Dr. Robbins’ office awaiting her consultation and delivery of the lab screening results. Every moment of these hours mounted sinking feeling upon sinking feeling, not only in my stomach, but in my heart. As a nurse with 4+ years of Neonatal Intensive Care experience, I knew enough about what the ultrasound tech said he saw on the ultrasound and where it lined up with the Quad screening results to expect the worst. In her loving, straightforward way, Dr. Robbins confirmed our baby had Trisomy 18, a condition which is caused by an error in cell division so rare it affects 1 in 6000 live births. The developmental issues caused by Trisomy 18 are associated with life-threatening medical complications in the early months and years of life should baby make it to term. The outlook was not good.
Needless to say we were devastated. Dr. Robbins, again in her beautiful, personal way, gave me permission to open the floodgates and begin the grieving process. And as tears streamed, she gently asked us if we still wanted to know the sex of the baby. We agreed we did without hesitation. Girl. All at once I felt the emotions of loss. Like something had been snatched out of my hands. I wanted to celebrate, but I could not. A girl. Our girl.
Kelly and I agreed on the way home from the doctor telling the girls, especially Emma, was going to be gut-wrenching. She was already knee-deep planning a gender reveal party complete with bows and bowties. We both found peace praying this experience would point them to Jesus. And boy did it. Especially for our oldest, Emma. The Holy Spirit at work within her throughout the pregnancy still blows me away.
Surprising even myself, I wrestled heavily in the early weeks of her diagnosis and the depth of all that was going on in her tiny body of whether to choose life. I was told she had a heart defect, complete omphalocele (a birth defect in which an infant’s intestine or other abdominal organs are outside of the body because of a hole in the navel area), and that she likely would not survive past 22 weeks in utero. I truly had the “curse” of knowing too much scientifically, and in my experience in the NICU, I personally cared for babies with these issues and more and saw the suffering they endured. I did not want my child to be in any pain if it was in my control to stop it.
Ultimately, this is where things began to happen, and God began to move. Emma’s innocent words pierced my heart, “Mom we just don’t know how much time we will get with her.” I heard the song Thy Will, and it became the anthem of my heartcry. It was odd to pray for our baby to go to heaven, and that wasn’t necessarily my prayer, but it all seemed inevitable based on the facts at hand. My prayer became Thy Will lifted to heaven with a strong protective mommy desire not to have my baby girl suffer. I found rest knowing His Will far surpasses human understanding, and His protective desire not to have His child suffer surpassed even my maternal desire. His Will, not mine, led me to choose life and carry baby girl as far as possible.
A sweet man shared his family’s story early in our baby’s diagnosis. His willingness to open up and lead us in prayer forever left an impression on my heart. Our conversation evolved into his urging us to name our precious angel no matter the potential outcome. For our baby girl number three, we felt we wanted a name with strong meaning. We decided on Joanna Faith. Joanna means “God is gracious” and Faith because as Emma said several times throughout pregnancy, “We have FAITH God is in control.”
My favorite way to pass time became praying and conversing with my Heavenly Father, the Creator of my heart and the knower of my soul, and having a name for our girl only sweetened the conversations. Calling her by name, his child He also knows by name, provided a healing balm. It was in this period a friend also taught me the importance of praying specific prayers. We often believe the lie the enemy tells us that specific prayers are selfish or silly or tiresome. They’re not. Our very personal, very loving God wants to know exactly what we need. And the crazier thing is, He already knows it before we do. Nothing frightens Him or shocks Him. In this deep, dark trial of crying myself to sleep many, many nights, I learned to pray specifically for my needs, for my family’s needs and for those of precious Joanna Faith.
In so many beautiful ways, God showed up for me and prepared our hearts for the coming unknown as best one could possibly prepare them. God showed up EVERYWHERE in my pregnancy with Joanna. In addition to the specific stories below, through family, through words Emma would say, amazing friends and community, in songs, in church, in the sunset, sunrise, throughout the day and especially at night when I would cry myself to sleep, He was with me.
I even think God was preparing my heart for the nurse’s call which lead us onto a path of no return. We completed the same Quad screening test with both of our previous healthy pregnancies, but in waiting for Joanna’s results, I felt restless. I awaited the call with more anticipation. I don’t believe the Lord ever intentionally gives us fear or anxiety, but I do believe He was preparing me in some way.
Similarly, the week before we were given Joanna’s diagnosis, I attend the IF gathering in Austin. On our drive home, my friends began talking about the pregnancy loss stories of Jennie Allen, the founder of IF, and Danielle Walker, the founder of Against All Grains. I remember thinking how difficult it would be to know the baby you were carrying was sick throughout your pregnancy and then holding your precious newborn after they had already gone to heaven… Ten perfect fingers and toes, a head full of hair, perfect skin and eyelashes… all without ever taking a breath outside of your womb.
Once we found out about Joanna, I remember going to read the amazing words of Jennie and Danielle in their blogs and in a couple of Jennie’s books. They brought me great comfort. I was not alone. Fast forward to me being 30 weeks pregnant with Joanna when our whole family attended Lost Valley Ranch in Colorado. There I met Brooke Warnock, and through conversation, I learned she was Jennie Allen’s sister and she too had suffered late term pregnancy loss with a precious baby girl. Her words and the sharing of her story were so encouraging. Another heart preparation point person is Kendra Robinson whose precious baby boy Dillon also had Trisomy 18 and went to heaven before he was born. In His grace, we connected early on in both of our pregnancies, and she was such a huge support through encouragement and prayer. Finally, Andrew and Jennifer Greever who also lost their sweet baby boy sent us a very soft blanket with Joanna Faith monogrammed on it. We still snuggle with this blanket often.
My point here is God does not ever leave us or forsake us, and in suffering, look around you. He gives you pillars of strength through His hands and feet, through His own children. Staying in communication with Him through prayer and scripture memory, the Holy Spirit carried me through. I firmly believe God orchestrated so many people and circumstances in our daily lives throughout this trial to help bring comfort and extremely valuable resources.
Even as He brought comfort in every realm possible, the pain was deep and persistent. Think of walking in the grocery and seeing a pregnant woman – you smile at them and nod knowingly at their stomach, right? You might even strike up a conversation surrounding their pregnancy in the checkout aisle. This was probably one of the most challenging situations for me… seeing acquaintances or well-meaning strangers and not knowing how to respond. Sometimes I felt like sharing and talking. Other times I was more emotional and guarded so I would use simple words or updates. Sharing in a Facebook group helped because many people I saw often read updates there. A wise friend encouraged me to have a script. All this to say, my typically social self took a hiatus, and I am still working on being more social and open. What once energized me (conversations and meeting new people) became a heavy burden that has only lightened with time and His grace.
I don’t remember the exact turning point toward focusing on the emotional effects of my physical health, but I am still working on correcting my posture and loosening the muscles where I carried a lot of my emotions. The body, mind and heart are so interconnected, one piece affecting the next. The emotional toll carrying Joanna took on my body physically gave me a living testimony for this theory. I lived this and teach it to my clients. What you’re feeding your body, mind and spirit all matter!
The support of my parents, my family, the girls and our wonderful friends who lifted us up throughout Joanna’s pregnancy still makes my heart leap. In addition to this support, my husband Kelly was my greatest pillar of strength and comfort. God showed up for our marriage big time. We decided early on we wanted to have open communication and only move forward with decisions unless we were on the same page. We prayed together often. I don’t know what I would have done without him by my side for all of appointments, holding my hand and being my shoulder to cry on anytime I needed him. Throughout my pregnancy with Joanna, Kelly continued to say, “He is good ALL the time.”
And He is.
Thank you for reading this and following my journey. If you or anyone you know is struggling through a difficult pregnancy, please do not hesitate to reach out to me. In closing, here is a list of verses and songs that brought me comfort; I hope they lift you up! I hope you’ll follow along and be encouraged as I share her birth story in coming weeks.