Our 18 week anatomy scan was scheduled for Tuesday, May 22nd. I had eagerly anticipated this day for weeks. My last appointment had been at exactly 13 weeks, and I was beginning to feel impatient. I couldn't wait to see our baby. Of course, I wanted to know the baby's gender, too, but anxiety and fear were uninvited friends during my pregnancies and I was ready for some reassurance.
The Monday before my appointment I received a phone call from my OBGYN office. The ultrasound machine wasn't working, and they needed to reschedule my appointment. I was frustrated to say the least. I tried to find any loophole I could to get in earlier, but Friday was the soonest they could see me. We had a gender reveal party planned, and I was eager to tell my students the baby's gender before summer break. All of those plans fell apart. We postponed the gender reveal, and I said goodbye to my students with a promise that I would email their parents the baby's gender. Matt gently reminded me, "The Lord is just testing our patience". So we patiently waited for our appointment on Friday. My appointment was at 10:30 AM on Friday, May 25th. Mills was exactly 13 months old, and I had been carrying our baby for 18 weeks and 3 days. We had never felt more blessed. We were so eager for our appointment, and we couldn't wait to find out if Mills was going to be a big brother to a baby girl or a baby boy. These visits felt so familiar. So safe. They had always been a place of reassurance. A place where I got to see my babies, listen to their heart beats, and be reminded of how normal my pregnancies were. When I arrived at the doctor's office, Matt was still on his way. The nurse called me back only moments after I arrived. Since my appointment had been rescheduled, Matt had to shuffle around his morning patients in order to make it to the appointment on time. I had almost told him not to go to the trouble. Looking back, I had no idea how imperative it was for him to be there. The ultrasound technician began looking at our precious baby before Matt arrived. The viewing screen was turned off at the time, and she said she was just taking pictures and measurements. I remember her saying, "Sweet, little lips" several times. Looking back, I wonder how much she already knew about our baby. Were his lips all she could find that appeared normal? Once Matt arrived, she began to give us a few details on what she was seeing on ultrasound. She said our doctor would give us more insight when we met with her. Just the thought that anything was wrong with our child terrified us in those moments. I remember so clearly thinking, "Well, the ultrasound machine was broken the other day. This is just a big mistake." I was so sure. There was no way there could be anything wrong with my baby. Denial was settling in quickly. We walked the hallways to the nurse's station. She took my blood pressure which was low as usual. We had nothing to worry about, right? We boldly walked the halls to our room, holding on to our naivety that there couldn't possibly be anything wrong with our child. Matt and I sat in the room together, but we were completely silent. The doctor entered the room and we talked about Mills briefly. She then began to explain to us in detail what the ultrasound technician had been hinting at. An omphalocele or gastroschisis. Those are the only words we remember. And it's probably because we had her repeat them several times. What is wrong with my child? In these moments, anything other than normal terrified us. We were blindsided. I had managed to keep my composure, hearing everything as facts. Striving to separate these facts with the life of my child. But as we wrapped up our conversation, our doctor said, "I know this isn't what you expected to hear". And the tears, not so gently, began to fall. I collapsed. The barrier I had been building between a diagnosis and my child was torn down. This was my child. And my child was sick. And I couldn't run from it, I couldn't fix it. We were told we needed to schedule an appointment with a doctor of maternal fetal medicine. The ultrasound technicians at this practice would have more experience and insight into our situation. It was the Friday before Memorial Day weekend which meant the earliest I would be contacted to set up an appointment was the following Tuesday. The four days of waiting were long yet full of so much hope. We weren't asking God, "Why?" or "Why us?". We were full of faith that our baby would be healed. Over those four days, we tried to stay away from the internet as much as possible. But, what we did learn was valuable. We learned that half of the time an omphalocele is present with no other complications. Please Lord, if you don't heal our child, please let this be all that is wrong. The other half of the time, the omphalocele is a sign of genetic disorder. Lord, there's no way this is our story. We are both healthy, normal people. Our families are healthy and our firstborn child is healthy. How could this be true? My appointment was scheduled for Wednesday, May 30. And those were our thoughts and prayers as we entered this appointment. We were full of belief that our child would be healed or the omphalocele would be the only obstacle our child faced. Honestly, an omphalocele still terrified me. It would mean my child would be taken immediately to surgery to relocate his organs to the inside of his body. I couldn't fathom it. We arrived overly early to fill out pages of paperwork. Then, we were quickly called back to meet with the ultrasound technician. She was so kind. I can't wrap up my emotions into a quick sentence. We were hopeful, terrified, at peace, anxious, quiet, bold. Every emotion all at once. She began the ultrasound and let us know that she wasn't able to tell us exactly what she was seeing, but that she would share what anatomy she was looking at. We immediately noticed the large omphalocele. As she took measurements, she pointed out which organs were located in the omphalocele. She was telling us that many of his major organs were growing outside of his body. Deep breath. She proceeded to take measurements of the brain, heart, and other extremities. In our naivety and inexperience, we thought everything looked great! We could see blood flow, hear a heart beat, and see the presence of his organs and limbs. Please, Lord. Let it just be an omphalocele. Our doctor entered the room, introduced himself and began to quickly look through the images the technician had saved. It seemed like it only took him a few moments, which I quickly interpreted as a good thing. Everything must look normal, right? He proceeded to ask us what we knew. We responded, "We've been told our baby has an omphalocele". To which he responded, "Yes, there is an omphalocele. But, there are many things wrong with your baby". As he flipped through the images, he explained in detail every defect shown: the brain, the facial bones, the omphalocele, the heart, the wrist, the feet, the genitals. So many pieces of his body, so broken. After discussing the anatomy and the ultrasound photos, he let us know that in his opinion, our baby had Trisomy 18. However, he said in order to confirm, we would need an amniocentesis. My initial reaction was, "I don't care what's wrong with my baby. I don't care what his diagnosis is. That doesn't define him. I'll love him and carry him regardless. Get me out of here". We told the doctor we would need some time to process everything and discuss our next steps. Once he and the ultrasound technician left he room, we just sat there and cried for what felt like a long time. In those moments, I hated his words. But as we left the office that day, his ability to be blunt with us left us with no questions. We knew exactly what he said about our child. Once we finally stepped out of the room, we were ushered out the back door to avoid the waiting room of patients. I never want to use a back door to a doctor's office every again. The next 24 hours were filled with lots of tears and prayers. We held Mills so closely, Matt and I took long walks to talk, and we worshipped. We spent time with our Maker, asking him the most honest and raw questions our hearts could create. We felt like we were on the fast track of grief. The fast track of figuring out how to die to the emotions of our flesh and let the Holy Spirit guide us through this unimaginable journey. We had a 13 month old who needed his mama and daddy. We didn't have time for depression. We didn't have time for the enemy to win. We needed God to get his glory. I really struggled with the decision to have the amniocentesis. It's just something I never imagined doing. There were a few main reasons we scheduled the appointment. The main one, we wanted to be sure of gender. A week prior, we had been told our baby was a boy. However, at the ultrasound with maternal fetal medicine, the technician wasn't so sure. She actually asked us if we were having a girl. Because of the way baby's anatomy was forming, they had trouble drawing firm conclusions. The amnio would tell us gender. The other reason we went through with it was because we wanted to know what we were facing. If God chose not to completely heal our child, we wanted to know what to expect. Friday, June 1, we walked in the doctor's office for the amniocentesis. I strived to be brave, but my heart was collapsing. As the doctor explained the risks, the tears started to form. I wasn't ready to lose my baby. The entire procedure, I just cried. Honestly, in the natural, it was painless. They kept asking me if I was okay. I reassured them, it didn't hurt me at all physically. But my heart was aching at the thought I could lose my child because of the procedure. Quickly, it was over and the ultrasound technician checked for a heart beat. And there it was. My strong boy. Praise the Lord! We waited a few days for the initial lab results to come back. When that phone call came, we learned that it showed Trisomy 18 and a baby boy. We were dismissed from the maternal fetal medicine office. There's nothing doctors can do for our baby. I am now being seen at my normal OBGYN office every 2-3 weeks to check in on precious John Haven. His growth measurements, his heartbeat, and any signs that he's not okay. Our prayers are bold. With each ultrasound, I have full faith that I will see miracles. Yet, I'm also learning to live by faith and not by sight. We refuse to be shaken. We refuse to be discouraged by what we see. We are continuing to declare miracles over our child, speaking words of life over him. We are drawing closer to the Healer, trusting his plan for John Haven's life. The Lord is so near, teaching and guiding us each day. He is all we need. Also, how amazing is it, the impact John Haven has already had for eternity? His life has such purpose, hallelujah!! I'll declare it forever, it is such an honor to be his mama.
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I’ve thought a lot about that first appointment. I was 9 weeks pregnant. The enemy had planted a few seeds of fear, but we were mostly so naïve and expectant of a normal pregnancy. We were discussing baby names, dreaming of Mills being a big brother, and hoping my morning sickness would end soon. We prayed diligently for our child, but our minds were still set on earthly things. We weren’t prepared to hear that our child might not live. But is anyone? This journey we are walking is a holy one. The Lord has allowed our hearts to be thankful for this season. It’s an honor to carry John Haven. We are experiencing the Lord in the most intimate way. His presence has permeated our hearts and lives. He’s offered us supernatural peace, and we’ve felt the overwhelming comfort of the Holy Spirit.
In the days following John Haven’s diagnosis, we wondered how we were going to bravely navigate this season. Lately, the Lord has been teaching us that, just as he provided manna for the Israelites in the wilderness, he will provide exactly what we need each day. He is giving us just enough grace, just enough hope, just enough joy, just enough strength, and just enough peace to walk these days. We aren’t worrying about tomorrow. All this hope, yet, it’s still difficult. It’s difficult to see my child on a screen, so broken and beautiful, knowing I can’t fix him. But these realities bring me right back to my Maker. These emotions usher me into a place of worship. While it’s difficult, it’s so freeing to know that I’m not in control. I’m not John Haven’s healer. We know the Lord is going to heal John Haven. We just don’t know if it’s going to be on earth or in heaven. Our prayer continues to be healing on earth. We pray we get to hold John Haven in our arms all of our days, not just in our hearts. Even still, our hope is in eternity. As I sat waiting for my most recent ultrasound, my prayer was to not be shaken. No matter what we saw, no matter what I heard, my hope would remain in Jesus not a diagnosis. I recalled 2 Corinthians 4:18: “So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.” As the ultrasound began, I could so clearly see John Haven’s brokenness. The Holy Spirit quickly filled the room, offering the perspective of eternity. He reminded me of the faithfulness of God. The miraculous power of our Father. The Lord’s perfect sovereignty. I would not be shaken by what my eyes were seeing. I would be filled with hope that either way, we still win. We want healing on earth, but if not, friends, He is still good. “Draw near to God, and He will draw near to you.” James 4:8 "And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus." Philippians 4:7 Jesus is so near to us in this season. But I know He's always this near. We're just deciding to sense His nearness. We're choosing to feel His presence. I read His word, words that I've known all my life. But they have become life to our bones. They are medicine to our hearts. Never have we felt the presence and peace of God like we do right now.
As we navigate these days, our hearts have been filled with a delicate combination of grief and joy, sorrow and hope. We haven't allowed our hearts and minds to question God. We aren’t asking him, “Why?”. The night before our appointment with the high risk doctor, the Lord kept me up for several hours in the middle of the night. As I spent time with Him, He confirmed in my heart that He was all that I needed. He reminded me that He was always good and that His love endures forever. So while we may be grieving, we are not angry. How could I be angry with the One who created John Haven? It's difficult to comprehend, but the Lord loves John Haven more than we do. That’s difficult for our hearts to grasp. But in the middle of this grief, that's a safe place for my heart to dwell. In all things, even now, His love is trustworthy. He is still good. Lord, I trust you with John Haven. He's Yours, not mine. And I am Yours, too. As we try to continue our lives as normally as possible, I've had to come to terms with a few things. As I dwell in this balance of joy and grief, I’ve had to lean into Jesus and the body of Christ for wisdom on how to navigate these emotions. And what I’ve come to find is that just because I'm sad, it doesn't mean I don't trust the Lord. And just because I'm okay sometimes, it doesn't mean I'm not grieving. I understand the complexity of it all. Everyone else’s lives are continuing on, and we’re all in different seasons. Some are celebrating the miracle of new life, while others may be mourning the loss of a loved one. Where we stand, however, is in both seasons at once. We’re joyful and heartbroken. And I never knew I'd walk both of these roads at once. I wasn't prepared for this. So we’re navigating our emotions, but what do we do now? This was one of the first questions I asked. Matt and I were on a walk the day we learned of John Haven’s condition. We were voicing our raw and honest emotions. Our questions. Our prayers. And I asked him, “How long do we believe for a miracle? How far do we let our hearts go?” I couldn't begin to imagine what life was going to look like over the next few weeks and months. How does a mama carry her child with a diagnosis of death but the hope of life? Looking back on those initial questions, I completely understand where my heart and head were in those moments. But oh the precious wisdom our Savior has given us over the past few days and weeks. While we pray for the miracle of healing on Earth, the Lord has taught us that heaven is a miracle, too. So we won’t stop praying for a miracle. Life on earth or in heaven, well, they are both miracles. Either way, we win. Jesus wins! John Haven, he wins! Because as much as we want to know our child, to watch him take his first steps, shoot his first basketball, graduate college, and marry his bride; we know that receiving the miraculous healing of heaven and spending all his days with the Father, that's a glorious miracle, too! Our hope in heaven has never been more real. I dream of the next 70 years of my life being spent with John Haven here on earth, but oh am I grateful that I’m already promised eternity with him. So here we are. Believing whole heartedly that our God is a God of miracles. He has all authority to heal John Haven. But we won’t be angry if he doesn’t give us the earthly healing we are praying for. Will our hearts grieve if a day comes where we have to say goodbye to him? Absolutely. But we’ve decided in our hearts that God is good. And that’s enough. As we’re believing for this miracle, the Lord has been teaching us about the parable of sowing and reaping. We’ve decided if we sow for the miracle, we might reap the miracle. But if we sow for a funeral, we might reap the funeral. I'm not ready to plan John Haven's funeral. So I'm not going to. John Haven is alive inside of me right now, and we are believing for the miracle of supernatural healing and life on earth. We believe he is going to be completely healed. It's the Lord who has the final word, and until He's asked John Haven to join him in heaven, this mama will not plan a funeral. I will not choose a gravesite nor a coffin. I won't choose a resting gown or a hymn to be played. Instead, we'll buy him newborn clothes. We will set up Mills' big boy room so that John Haven can have the nursery. We'll buy new bottles and pacifiers and newborn sized diapers. Instead of preparing for a funeral, we're going to prepare for life. See, if we're believing for a miracle, we think we should prepare for the miracle. We're going to give God room to move. We refuse to sow the seeds of death. Instead, we are going to sow seeds of life, expectant of the life that will join our family in a few months. Though there are so many difficult pieces to this season, can I be honest? I am loving waking up each day and telling satan he loses. I'm in tears over this. We are defeating the enemy!!! How glorious is this? The enemy would love nothing more than for us to collapse over this pain. To give up our faith. To question God. But I refuse to let the enemy win. He has no power and no authority. He does not get to own this story. Jesus does. And Jesus will get all glory, however he decides this story shall end. People keep telling us that we're strong and brave. We're not. We have a mighty King who is strengthening us with His peace and love and opening our eyes to the opportunity He's given us to storm hell's gates and tell satan exactly who our King Jesus is. This truth overwhelms me. What an honor. The Lord continues to teach us and shape us every second of every day. Ultimately, we’ve decided to enjoy these days. To let the tears be few and the joy be great. To live in the present, soaking in each day with our boys. We are speaking words of life over John Haven. Every day I tell him, “John Haven, you are healed. You will live!” And to the Lord I say, “You are Healer. You are all we need. Lord, heal John Haven.” These days are good, friends. And you know what? We’re only on earth for a short season. It’s eternity that matters. I’m grateful for the God that walks with me now and has promised me and my babies eternity with Him. If you're praying with us along this journey, will you believe in the miracle, too? We'd love nothing more than for you to join us in prayer declaring COMPLETE healing over John Haven. We're not just believing for life or breath in his lungs. We are binding the diagnosis of Trisomy 18 in the name of Jesus and declaring his chromosomes to realign exactly as the Lord designed them to be. We believe the cysts that encompass his brain will be healed, for the walls and chambers of his heart to form, for his facial bones to grow, for his arms and legs to have the exact number of bones that they should, and for his genitalia to form exactly as it should. We believe for his omphalocele to be healed, and that all of his organs would be located inside his abdomen. Our baby is sick, we know this. But praise the Lord, we know the Healer, and we believe He is able! John means “god is gracious” and Haven means “safe place”. We declare these names over our child. Even now, God is still good. He is gracious. And we know His plan for John Haven is full of grace. We praise the Lord that he’s allowing me to carry our child in the safety of my womb. That we are able to spend these days with him. And we ultimately praise Him that all of his days, whether on Earth or in Heaven, will be spent in the hand of the Father. Our gracious Father, our place of safety. Our prayer everyday, “Lord, heal John Haven.” Our diagnosis is Trisomy 18, but our hope isn’t in a diagnosis. It’s in the King of Kings. We are on our knees believing God for the miracle we know He can do. We know He is able to heal our child completely. But we’re also learning to rest in the understanding that heaven is a miracle, too. We’ll love you forever, John Haven Outlaw.
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