The Heart of the Father in Times of Trauma
Written by Amber Bateman with Jason and Emily Stopper
From the Archives: The Journey Winter 2016
“For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made...Your works are wonderful, I know that full well. Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.” Psalm 139:13
Not many parents can actually say they have known their children at the cellular level as Christ knows us, but Emily and Jason Stopper have shared this experience with their Creator. After three years of trying to get pregnant, they prayed and sought the counsel of their pastor, ultimately deciding to pursue in-vitro-fertilization as an option for starting a family. They had the unique opportunity to see the embryos before they were implanted and prayed for the lives within.
For their first attempt, Emily and Jason decided to have two eggs implanted, not knowing if both would “take”. Within weeks, they were thrilled (and alarmed) to find out they were pregnant with twins! They trusted God with this news and began preparing for the new additions. They were finally going to have the family they had been praying for and trusting God to provide.
The plans they were making and ideas they had about the coming months came to an abrupt halt when Emily was put on bed rest at only 20 weeks pregnant due to complications with the pregnancy. Each day was a fight to prolong the pregnancy as long as possible. When she was 29 weeks pregnant they received disturbing news that their little boy had fluid on his lungs. The doctors felt that it would be wise to drain the fluid from his lungs in utero. Emily and Jason were nervous and concerned for the health of the babies but trusted the doctors’ wisdom and they trusted God to protect them. On December 31, 2012 they checked into Presbyterian Hospital in Charlotte for the procedure. They expected to return home and continue on bed rest after the procedure was complete. However, Emily went into labor shortly after being given steroids as a preventative measure to help the babies’ lungs. The doctors performed an emergency c-section when in the early hours of the morning the babies started showing signs of distress.
On January 2nd, 2013, they welcomed Sarah Catherine Stopper at 6:22 am weighing 3.4oz. Caleb Wendell Stopper was born only one minute later, weighing 3.14oz. They were overjoyed and relieved when they heard both babies cry, believing it was a good sign that they were healthy. Their relief was short-lived. The emotional roller coaster that had begun when she was only 20 weeks pregnant would continue.
They soon learned that Caleb had Down Syndrome along with a rare condition that is closely connected with Down Syndrome which affects the lungs, called Chylothorax. Chylothorax can cause respiratory morbidity, as well as lead to malnutrition and immunodeficiency. They were overjoyed to have their babies, but were concerned about the road ahead. At the mercy of the medical equipment, their interactions with their sweet new twins were limited and very different from what any first-time parents would ever imagine. Emily and Jason were encouraged when the babies were moved from the intensive care NICU unit, and felt that they were entering the exit phase of this ordeal. They hoped and believed they would get to bring both babies home soon.
The Stoppers were pleasantly surprised when their baby girl, Sarah, was released from the hospital sooner than expected. However, they felt a mix of joy and guilt as they brought her home because they had to leave Caleb behind. The weeks and months that followed were difficult for the new family as they attempted to navigate the logistics of taking care of Sarah while also trying to be present for Caleb in the hospital. They moved out of the Ronald McDonald house and rented an apartment in order to have some semblance of a normal life and schedule for Sarah. Emily picked up some hours at a friend’s dental practice in order to continue to provide financially as they waited for Caleb to come home. They took turns visiting him and had to trust the nurses to comfort him when they were unable to.
Caleb showed improvement and growth in certain areas so they remained hopeful that he would be released soon. But as time passed, the Chylothorax returned, this time on Caleb’s left lung, prolonging his stay. His condition seemed to be worsening and they were trying everything they could to strengthen him. He developed pulmonary hypertension. He started having episodes of distress where he would have trouble breathing and was obviously in pain. He eventually had to go back on a ventilator, was given a tracheotomy, special medications, and feeding tubes. The doctors were concerned Caleb was not responding to their attempts to relieve his condition. They saw less and less improvement.
Since the babies had been born, Emily and Jason experienced moments of confusion, helplessness, worry, and loneliness. They struggled with anger at God and at the situation. No one really knew what they were going through; friends and family were miles away. Cards, gift cards and calls offering encouraging words were a comfort to them, but ultimately this was a journey they walked alone with God. One scripture that Emily clung to was, Romans 12:2: “Rejoice in hope, be patient in tribulation, be constant in prayer.”
The nurses kept trying to prepare them, telling them that fifty percent of all marriages that have a child struggling for life in the NICU end in divorce. To Jason, it was silly to think that there would be any reason to get a divorce just because they were going through a difficult time. He devoted himself to constantly supporting Emily through all the ups and downs. Jason committed himself to remaining united with Emily, not allowing division to come between them. They had brief moments where they were irritable with each other, but only over silly things. This experience put their marriage vows to the test but ultimately strengthened the bond between them. They really only had each other (and Christ) to lean on, to understand what to pray, to understand the silence, joys and tears in each victory and each setback.
Through all the ups and downs, hopes and disappointment they found comfort and strength through the relationships they made with the nurses who cared for their little boy. The nurses were there for them when friends and family were unable to be physically present. Many of the nurses obviously walked in faith in the living God and encouraged Emily and Jason through their dedication to their work and gentle guidance.
One nurse named Rachel had made a special connection with the family. She would care for Caleb at night and was often the one that came to his aid when he would have one of the horrible episodes that were becoming more and more frequent.
One morning as Emily was coming in to visit Caleb, Rachel told her about a profound moment she had with Caleb the night before. She said he had experienced a severe episode and seemed to be in extreme pain that evening. She wasn’t able to relieve his symptoms but remained by his side. Rachel spoke to Caleb during the episode and said, “Caleb, if you see Jesus, it’s okay.” Rachel said that Caleb smiled and seemed to regain peace. Emily and Jason found comfort knowing that Jesus was near and perhaps Caleb had been able to see a glimpse of his face during his time of trouble.
The next day Emily and Jason made the difficult decision to remove the feeding tubes and ventilators. Sarah, his twin sister, had not been able to go to the hospital with them because they could not risk compromising his delicate immune system, but this day the hospital allowed her to join them. They would finally get to be together as an entire family, even if for a brief time. For the first time in months, they were able to hold their precious baby boy. They felt his skin, and hair, breathed in his essence, talked with him, prayed over him and savored the remaining moments.
Caleb went home to be with Jesus on August 8, 2013. He was seven months old. They were able to be with him when he passed. They experienced insurmountable pain in their loss. Their love for their child had never wavered even though their relationship with him was far from normal. Emily and Jason graciously donated Caleb’s organs to other children who desperately needed them. They know that his eyes and his heart valves were able to be used. They rejoiced that they were able to bring hope to someone else through this loss. They had a celebration of life for Caleb on August 11th. His body was laid to rest in West Jefferson cemetery. On the same day, they dedicated Sarah, Caleb’s twin, to the Lord in order to show that even through these trials they trust God with their child. They were dedicated to raising Sarah to love the Lord. Sarah has played a huge role in helping Jason and Emily heal.
Returning home to Ashe County, without Caleb, after 7 months of being away was extremely difficult. Emily found it difficult to readjust to being “home” as “home” had been Charlotte and Presbyterian hospital for the last several months. Emily recalls feeling somewhat isolated in what she was experiencing and felt the need to talk with someone who had experienced a loss similar to hers. That’s when Emily’s friend, Fran Petrey introduced Emily to her sister-in-law, Daphne Petrey.
Daphne had also lost a baby boy. Daphne was a huge help to Emily, offering a listening ear and words of encouragement, comfort and friendship. Daphne recently published a children’s book about the loss of her son, entitled: I Have A Brother-My Brother Is In Heaven. The book is intended to help other grieving families know they are not alone in their hurt and grief. Emily treasures this book and reads it to her children regularly.
While this experience may scare some parents away from having more children, Emily and Jason firmly believe that God has a plan and purpose for the additional embryos they preserved through in-Vitro-fertilization. They plan to use all the embryos collected for the purposes of starting a family. With the help of IVF, On November 24th, 2014 they were blessed with a second daughter named Hannah. She is healthy and full of life. On December 26, 2015, Emily took a pregnancy test and found out they were expecting another child, only this time was without the help of IVF. It was a wonderful surprise and blessing! Three years to the month after God took Caleb home to be with Him, He gave Emily and Jason a second son. They welcomed their son, Titus, on August 16 of this year and he too is healthy. There are still two embryos remaining so they are excited to see if God will bless them with more children in the future.
Emily continues to work with her father as a dentist at their shared practice, Mountain Town Dental. Jason has worked with them as an office manager since 2011 while also serving as a Major in the Army Reserves. His experience with the medical staff in the hospital helped him see the powerful role that Christians can play when working in a profession that serves people in some of their most vulnerable and depleted moments. He is currently working toward becoming a paramedic so he can offer the same support he witnessed, as he walked through the toughest time of his life.
Most people do not often connect love to pain, but, in actuality, these two are often closely intertwined. To need and experience love is to be human, but sometimes the depth of love is not known without loss. Caleb’s death is the most excruciating loss Emily and Jason have ever experienced, but the pain they feel reminds them of the deep love and bond they shared with their first son. So they welcome the opportunity to talk about him, share his photos and share this story with family, friends and now, the world. They still include Caleb in their everyday lives, talking about him with their children and thanking God for the time they had with him.
Thanks to Caleb their perspective on life has forever changed. The door was closed but the window was opened to allow them to truly see God in a new way. Now when they look back on this experience, they see His hand throughout this painful time in their lives. Though Emily will never truly understand or be okay with the fact that Caleb passed away, her perspective of life and heaven shifted from a distant concept to a very real understanding. She now has an eternal perspective, knowing she will see her son again. She knows this is not the end. She feels closer to God than she ever had before.
Jason’s perspective as a husband and father also changed. Jason came to know God in a deeper way through this experience. He realized that if he truly believed in God that he would have to trust God as the Father of all, including his own children. He understands his role as a husband and father in a deeper way than ever before. He realizes now, that he is the second father to his children and that God is the one true father. God is letting Jason borrow his children and Jason’s job is to shepherd them. Just as any father can call their child in from playing, God can call his children home as well. As much as Jason wanted Caleb here on earth, he knew that his body here on earth, was wrecked. He is comforted knowing that Caleb’s body has now been made whole, with Christ in Heaven. He feels that being a good husband and good father are the two most important jobs given to him by God in order to show his faith in Jesus Christ the Lord and Savior.
While their faith was tested during that time in their lives, they rejoice knowing they are firmly planted in their relationship with the Lord Jesus Christ. At any moment during this entire ordeal, Emily and Jason would have given anything to take away their son’s pain to make him whole. Now they understand more fully, the love the Father has for them that He would lay His own life down so they can be whole again. They have experienced with Him the joy of creation and now, the pain of love and sacrifice. They know now, more than ever, that He alone holds their lives in His hands. He will not leave them or forsake them. He was broken and gave His only Son for them that they may know the true meaning of “life”. They find solace knowing that Caleb is not in pain anymore; Caleb is now alive with Christ!
“But he was wounded for our transgressions, and he was crushed for our iniquities, and the punishment that made us whole was upon him, and by his bruises, we are healed.” (Isaiah 53:5)
