The story of Joshua Isaac, August 14, 2002 to December 11, 2002. Born with Trisomy 18, a fatal genetic condition. Blessed to be his momma.
I knew it from the beginning. From the very early days of the positive pregnancy test. Something wasn't right. It's been said a mother knows. That we have this intuition, something deep within. And yet, being a women often controlled by fear and worry, I pushed it aside. Even when my close friend said, "Stacy, you aren't carrying very big for how far along you are." Or when the baby was more quiet than I'd like growing in my womb. I knew something was different with this pregnancy. I had had very complicated pregnancies for my first two babies. Complications seemed to be a given with my pregnancies. Then baby three felt like a breeze. No abnormal blood tests for me. An uncomplicated 38 week c-section delivery. A healthy 8lb. 12 oz. baby boy and a healthy momma. But baby number 4, felt different.
At about 21 weeks, we got the devastating news. My husband and I went in for the customary 20 week ultrasound. The technician was strangely quiet. She didn't answer many of my questions. We tried to be light hearted and cut through unspoken tension in the room. At one point, the technician asked me to get up and use the bathroom so she could get a better look at something. Seemed like a strange request but of course, I obliged. She took pictures, told us we were having a boy and sent us on our way saying nothing out of the ordinary. My husband and I went out to lunch, giggling and rejoicing at the prospect of four boys. He went on to work and I went home to join my three younger kids and the afternoon routine.
A few hours later the phone rang.
My almost six year old was sitting at the kitchen table while the other two were napping. It was my obstetrician's nurse delivering the news that my ultrasound showed some abnormalities that needed further review. Could I come in the next day, see the high risk doctor and have another ultrasound? The appointment was set as I hung up the phone in shock. Nothing to go on other than she said there were concerns with the baby's umbilical cord and the number of vessels. I called my husband and wept. Fear crept into my heart encasing the room like smoke from a fire. I felt like I couldn't breathe. Tears streamed down my face. Questions swirled as to the future of my son. And in those dark, fear filled moments came the voice of my little boy, Ben. "Mommy, why are you crying?" I was numb but tried to muster the strength that a mom needs to have in order to give an answer. "The doctor's think there might be something wrong with the baby growing inside of me." And Ben said without hesitation, "Mom, remember Joshua 1:9, 'Be strong and courageous. Do not be afraid. The Lord is with you where every you go." In that moment, God ushered truth to the deep crevices of my heart. Spoken through my child, with the childlike faith God is after, speaking to my questioning, fear-filled heart. And peace entered the room.
We would learn the next day, through ultrasound and eventually confirmed through an amnio that our unborn son had a fatal, genetic condition known as Trisomy 18. His 18th chromosome was damaged upon conception. A chromosome that affects many facets of life to the extent that this condition is labeled in medical journals as "incompatible with life." It was a label the doctor shared with us in the ultrasound room as he began listing the litany of problems he saw with our little boy. His kidneys had cysts, his umbilical cord didn't have the right number of vessels, the cerebellum of his brain was abnormal, his intestines were forming outside his abdomen and his size was abnormally small. Statistics said that he would either die before delivery or upon taking his first breath. And if all of that wasn't enough, the doctor then encouraged us to take his life early. To have an abortion. There was an urgency in his voice because I was so far along. We'd have to act quickly and get this scheduled. It was like an earthquake was happening all around me and yet I couldn't move. I was immobilized. Frozen. Numb. And I couldn't stop the tears or even think through all that was just shared with me. I was rolling headfirst into a pit of darkness and despair. I so wanted out of this nightmare.
For the next few hours, I contemplated aborting my son. Something I am not proud of or even like sharing. But it is the truth. I thought it could protect me from the pain of becoming attached to my son, of having to look into his eyes and his face and then bury him. But if you've had an abortion, I'm sure you know, it just adds another level of pain. It isn't what God desires. Life is not for us to take. If you've had an abortion and received Jesus into your heart, His blood covers your sin. His blood covers your abortion and His forgiveness is there. My heart aches for the pain you've experienced. But I knew abortion wasn't the answer. From the moment of conception, God gave Him life. He created my son. He had already numbered His days. He created him allowing His 18th chromosome to be damaged. Who was I to take his life or determine his days? In God's good and perfect ways, this was God's plan for my son. His plan for our family. His plan for me, his momma. I didn't understand it but had to accept it and deal with the question that if this God who I loved allowed this, was He a God I still loved and could trust?
It would be those questions and many more that I would wrestle out with God in the week following my son's diagnosis. The numbness that overwhelmed me in the doctor's room, carried me to my bedroom and under my covers. As life kicked inside of me, death permeated me. It was there I stayed for the next few days wishing I would wake up and this nightmare would be over. Praying that my son would be healthy and whole. My husband would come in each day and read me the Psalms. But my heart was unable to hear the words of comfort and peace. And I wrestled. Questioning. Pleading. All that I had seemingly known about God was being tested. But even more, God was testing my love for Him. Like Jacob's story in Genesis 32, I didn't let go of God.
After a few days, I finally opened my Bible. Having come to the end of myself. I looked to God with an expectant heart. What He began saying to me cut down idols, addressed lies and severed deep roots of fear. God led me to the book of Romans and it was like I was reading it for the first time. He brought me to Abraham as he was asked by God to lay down his son, Isaac. God brought me to Matthew as God told his disciples in Matthew 10:37-39, "He who loves father or mother more than Me is not worthy of Me. And he who loves son or daughter more than Me is not worthy of Me. And he who does not take his cross and follow after Me is not worthy of Me. He who finds his life will lose it, and he who loses his life for My sake will find it." Each bit of truth cut through my heart. Almost more than I could handle. A well springing up in my soul. And then, God brought me to the Garden of Gethsemane and the prayer that Jesus prayed just hours before His arrest. I have heard it said, that Jesus won the battle of Calvary on His knees in the Garden. It was there that His heart submitted to God's plan and there that He received God's power for the cross ahead. A heart surrendered to God is a heart empowered by God. It is a life that brings glory to the Father. It's what I wanted. And as Jesus' words penetrated the very tentacles of my suffering, I got off my bed and kneeled down, weeping. I had been brought to the end of myself. God asked me if I loved Him more than anything in this world? If I would follow Him no matter the cost? If I would trust Him with my son no matter the end of his story this side of Heaven? If I would submit to His will for my life and that of my son? I prayed the words of Matthew 26:42. "Lord, if you are willing, take this cup from me, yet not my will, but yours, be done."
And like Jacob. I knew I had been with Jesus. I was changed. A peace that surpasses understanding flooded my heart and my mind.
Our boy received his name that week. He was to be named Joshua Isaac.
Joshua entered this world on August 14, 2002. He was a very sick little boy. But God answered many of our prayers. Many of the physical abnormalities seen on his ultrasound were healed. His intestines were intact inside his body. His umbilical cord wasn't short a vessel, God gave him an extra vessel. And God gave him breath. God gave him life.
We brought Joshua home three days after delivery. He was fed through an En-G tube with my breast milk. He slept a lot. Made very few sounds and we began living life not knowing how many days we'd have with Joshua. When you think about it though, isn't that how God would have us live everyday? None of us know the number of days God has ordained for us. And so we savored the moments. We tried to redefine normal and not tiptoe around the questions from our children but point them to Jesus in the answers. We went about living, doing, being a family of five. On December 11, 2002, God called Joshua home to Heaven. In writing the David Bible study this past year, I shared this on one of the days of homework as David would receive news that his son, Absalom, had died.
It was in the wee hours of the morning when I (Stacy) awoke to hear his little cries. My almost four month old son, born with a fatal genetic condition, was struggling as he lay in his bassinet just feet from our bed. He whimpered and coughed so quiet but yet enough to startle my husband and me awake. Ever since he had come home with us from the hospital, the nighttime hours were the worst as I feared he would leave us, and we’d wake up to find him in the arms of Jesus. Joshua’s condition affected his breathing. Sometimes his brain would forget to tell his lungs to take a breath which happened a few times. Out of nowhere, he would begin to turn blue, and within seconds, I’d whisk him to my chest skin to skin praying that my heartbeat would regulate his. In the times prior, it worked and his breathing returned. This night would be different. He hadn’t been feeling well for a few days, and his breathing that night was labored. Before I would put him to sleep at night, I would ask God to be gracious and to please let us be with Joshua when He ushered him into heaven.
It was the grace of God that met me in those wee hours.
Barclay and I jumped out of bed and took Joshua into our arms. I knew it in the deepest parts of my heart. Joshua’s life was coming to a close, but I wasn’t ready. I felt him slipping away. The sobs of my heart rose to the surface and guttural cries came forth. “No, not yet. Please Jesus, not now. I’m not ready.” His breathing became shallow. His breaths spaced further and further apart. And then, he was gone from this side of heaven. Nothing can prepare us for death, especially the death of a child. There are names for loss of every kind, yet there is no word that describes a parent who has lost a child.
That night. Our son went to be with Jesus. The most difficult thing I have ever had to walk through. A pain and grief that can't be adequately defined or explained. But this I know to be true, "God is the same yesterday, today and forever" (Heb. 13:8). "God bears all things, hopes all things, believes all things, endures all things" (1 Cor. 13:7). "God is love" (1 John 4:8). His plans for us are good. He desires to give us a peace, a future and a hope (Jeremiah 29:11). For those who love Him and are called according to His purposes, He will work all things together for His greater good (Romans 8:28). The doctor's said my boy was incompatible with life. They look at the outside. God looks at the inside. And quite the opposite is true. My boy was used by God to give life. It was his life and the testimony of God's power at work that brought others to a saving knowledge of Jesus Christ. It was his life that God used to give me a new life in Christ. And it was his life that forever changed me, my husband and my kids, all for God's glory.
And the most beautiful thing, I will see my boy again in Heaven because of Jesus as He relinquished His will for that of His Father's and went to the cross for you and me. There is a reunion waiting. I can't wait for that day.
If you've ever said good bye to a child either through abortion, disease, accident or circumstance, my heart beats next to yours. I know the pain. I'm so sorry for the pain. But I also know the pain-healer and great comforter, Jesus. May you invite Him into your pain and allow Him to comfort you. Speak to you. Envelope you with His never-ending love. You are never alone.