The Night We Said Goodbye

There is no greater agony than bearing an untold story inside of you. - Maya Angelou

Well guys, I am out of excuses and quite frankly, I’m tired of fighting. This is the story my heart has been wrestling for nearly five years. It is the memory that caused me to sit down on the sidelines and quit running my race. The fear of sharing its details has caused me to pushed the pause button and completely stop writing, speaking and truly living. For the past four years I have allowed the enemy to silence me out of fear of sharing the final piece of Luke’s story in detail and the pain that it might myself cause others to relive. Quite frankly, I had given up on myself and this blog, but God (and some very persistent friends) never gave up on me.
If you know our story, then you know how it ends. I know there are a lot of mom’s who find this blog after receiving a tough diagnosis about your baby. If that is you, I completely understand if you want to hit the back button right now. I’ve been there.

I also know that I am not the only one who has experienced saying goodbye to their child on this earth. I write this so that you know that you aren't alone and that your empty arms aren't the only ones aching. Our stories may not be exactly the same but our pain is similar. I share this to honor you and your babies but please be encouraged that your story is equally beautiful and worth telling.

Ok, so here goes. This is not easy to write nor is it easy to read. It is heavy. It hurts. Yet, it has to be told. It is a real piece of our lives and Luke’s story. So, please bear with me...  It’s time to move on and finally set it free.

This is the night I said goodbye to my son.

----

July 8th, 2010 was a good day.

When you are confined to the walls of a hospital for days on end, your perspective begins to shift. Nine days spent in those walls echoing the same sounds and beeps over and over again. The prognosis had not changed. Our son was still not expected to live, but that day… there was hope. For many hours, his labs were stable, his fluid was draining and weaning from the ECMO machine looked promising. Our sweet tiny boy was waking up and becoming more alert -- moving his toes and opening both his eyes halfway. That day, I had stayed by his side, rubbing the few inches of his skin that was not covered in tape, gauze and tubes. We had some of our favorite nurses there with us and shared lots of stories and laughs. It was a good day.

 Our bright-eyed boy. July 8th, 2010.

We were tired. Exhausted. We decided that for the first time since our arrival we would go back to the hotel to get a few hours of uninterrupted sleep since our favorite nurse was scheduled to be with him. Leaving the hospital that night, we were happy and hopeful. We watched the Bachelor. My mom and mother-in-law slept across the room on the pull out couch. It was as normal of a night as we had experienced in 11 days.

Around 4am, our phone rang. It was our nurse, Jackie. She told us that we didn’t need to hurry but she wanted to warn us before we arrived that Luke’s condition had taken a turn for the worse. His circulation to his arms and legs had stopped overnight. We grabbed clothes and were out the door in a matter of minutes. We didn’t say a word the whole way there. We knew.

When I walked in the room, the entire atmosphere had changed. Nurses and doctors were everywhere. Jackie hugged us. I stood by his side but the little boy I had left just hours before now looked completely different.

Black. His arms from his elbows down on both sides. His knees to his toes. His teeny tiny fingernails and toenails… all solid black. The smell of nitroglycerin cream from a failed attempt to regain circulation reeked from his body. They warned me not to touch his skin or the cream would give me a horrible headache. I couldn’t help myself. 

 

They told us that we did not have to make a decision. That Luke's body was making a decision for us. They said that even if they were able to restore Luke's heart and we were able to go home that the lack of oxygen to his extremities had already caused so much damage that they would have to amputate both of his arms and legs.

The entourage of heart doctors rounded as usual that morning but didn’t stay long. There wasn’t much to say. Dr. Austin sat down with us and said the same words that we would hear hundreds of times over the next few days…. I am so sorry.

Heart and Hands arrived. I cannot say enough about what a blessing they were. They stayed with us most of the day and helped us “plan” what we wanted the day to look like. They prepared to take molds of his hands and feet. One of my most treasured possessions to this day.

At this point, some of our family members were beginning to arrive. Benson and I decided to make a quick trip back to the hotel to take showers and change clothes. There just are no words to describe what it was like leaving the hospital to “get ready” for what would be our last hours with our son. How do you dress for that? How do you even mentally prepare to say goodbye to your baby that you have just met? I remember praying so desperately in the shower and weeping with everything inside me. I knew that only a miracle could save my baby and I prayed..  pleaded with God for that miracle. I wanted that miraculous story for our boy's life so badly. But in the same breath, I knew. I knew that there was more to life than death. I knew that in the presence of my Savior, death had no sting. I remember so vividly crying out in that moment God, no matter what happens… he is yours. Just give me the strength to let him go if I have to.

Before we left the hotel, I forced myself to make one of the hardest phone calls of my life. As a photographer, there was nothing I wanted more than to photograph my baby. I had been studying and preparing for the day that I would bring my sweet boy home, wrap him up and photograph every detail of his sweet newborn squish. When we found out about Luke’s diagnosis, I ran across information about the Now I Lay Me Down To Sleep organization who volunteers their time and talents to photograph critically ill and/or stillborn babies. As a hopeful mom, the last thing I wanted was to have to rely on their services but I decided to save their contact information in my phone just in case. So, before heading back to the hospital… I found the number saved in my phone and called to tell them that my baby would be taken off life support in a few hours and I would appreciate if they could send someone to take photographs of us together. They didn’t ask questions, they just came. I am still so so thankful for that. The pictures that you see on this page were taken by one of their photographers. As hard as they are to look through, I will cherish them forever.

Coming back to the hospital, the waiting room was filled with sweet faces of friends and family who had come to rally around us that day. There are too many stories to tell here but God orchestrated some amazing details to make sure that our people could be there for us that day. They rallied around us with shirts, tears and hugs.

We spent the biggest part of the day, soaking up our sweet boy. We both tried holding him again for a few brief seconds but due to Luke's intubation, it proved very difficult. I remember being so happy to hold him again but so scared at the same time. I was terrified that I would hurt him but they assured me that his stats were stable in our arms. I guess our sweet boy knew exactly were he was supposed to be.

Since the ECMO machine was Luke’s primary form of life support, I asked that they remove every other tube and tape that they could so that I could see his sweet face. What a gift that was. I had not seen his face without intubation since he was born. I bet I kissed those little lips a thousand times. I put little UK socks on his feet - they were the only item of clothing he ever wore. We debated putting on a hat on his head but decided that his hair was too awesome to be covered up. Since his chest was still open, we placed his monogrammed blanket over top of him to cover his heart. He looked so perfect laying there... you would never know by looking at him that anything was wrong. He was the most beautiful baby I’ve ever laid eyes on.

As the day passed, Luke showed signs that he was starting to be in pain. This was absolutely heart wrenching for me as a mama. I watched helplessly as his nurses pushed maximum amount of pain meds through his lines to try and comfort him as best they could but his tiny face would still contort in pain. He would open his mouth to cry but no sound could come out. Every single time he tried to cry, my entire body ached with panic. The pain on his tiny sweet pace is still to this day, one of the most terrifying images that I wish I could erase from my memory.

Once everyone arrived, we invited people in to meet our sweet boy. This was the first time that anyone outside of our immediate family had the opportunity to see him. Our dearest friends, Bro. Troy Long and Bro. Brian Rafferty as well as our pastor at the time, Bro. Rob Hughes worked together to plan a special service for our boy. We prayed over him and christened him, dedicating his life and his story to the Lord. Our sweet friend, Leah was there. From early in my pregnancy, Leah had a unexplainable connection with our boy. She and Benson traveled and sang together in a Christian group called Steadfast and she had prayed and prayed for our sweet Luke. It was obvious that God made sure that Leah was there by our side that day and as we cried and prayed over our baby, she lead us in some of the deepest and more pure moments of worship I have ever experienced. I am forever thankful that Luke was able to hear the sweet voices of both Leah and his Daddy worshipping together in person as he had heard countless times before while I was pregnant with him.

We are blessed to have a man like  Bro. Brian Rafferty in our lives. He was one of the first people we called once we received Luke’s diagnosis. His love and support of our family has never faltered. When we knew that this day would be our last with Luke, we instantly asked for someone to call Bro. Brian. As he stood over Luke that day, he cried along with us.. begging God to show up. He spoke scriptures of healing over our sweet boy and led us in powerful prayers that shook the entire floor of the hospital as we all cried out together… In the name of Jesus… Luke live. Those words have echoed through my heart ever since… and they are the proclamation that every single second we have on this earth should be not be spent just merely existing but that in 

the name of Jesus, we live.

Each person in the room then spent some precious time with our boy before they left. As the room emptied, the nurses moved the furniture around and brought in a couch that would allow us to sit and hold our sweet boy. It was not easy to hold Luke and nothing like I imagined or wished it would be. There were wires, cords and cannulas everywhere. Our nurses did the best they could to cover everything and make it seem and natural as possible but it was still very frightening as his chest was still open and his body very fragile.

Benson’s mom was the first to hold him. Followed by my mom and then my dad. There are no words to describe the pain I experienced watching each of them hold their grandson for the first and only time. Joy, grief, excitement, sorrow… it all mixed together in that room. Our sweet parents ached twice --- once for us, as their children and for the pain that we were experiencing but also for themselves and for all the dreams and memories they hoped to share with Luke. I will never forget the look on my dad’s face as he held Luke in his arms, memorizing every single inch of his sweet little face. My dad insisted that Luke was hungry and rooting to nurse so they handed him a wet sponge and immediately, Luke latched on and began to suck. Leave it to Papaw to be the one to spoil this boy. 

 

 

Once our parents had held him, Benson put him in his arms. It is no secret that my husband has a tender heart… he gets that and a million other wonderful qualities from his dad. As I looked at him that day, my heart hurt so fiercely for him. On our very first date, I remember asking Benson what the one thing he wanted more than anything in the world was and he promptly replied that he wanted to be a dad. You see, Benson had an amazing example to follow. I am convinced that there is no greater human being I have met in my life than Benson’s father, Tommy. Not only did he love the Lord and the church, he loved his family with everything that he had. From the moment I met him, Tommy opened his arms and welcomed me in, always taking my side and loving me like his own. Shortly after our wedding, Benson’s father passed away from lung cancer leaving a huge void in our hearts and in our family. Even though he wasn’t there that day in the hospital with us as we said goodbye to Luke, I saw him in that moment when I looked in Benson’s eyes holding our son. There was my husband… a father to a little boy. His greatest dream in the world.. finally come true.

Benson then handed Luke to me. This time, there were no nurses waiting to rush him to the NICU. It was just me and my boy. Everyone left to give Benson and I time alone with our son. For hours that seemed like minutes, I did not take my eyes off or him. I soaked in the weight of his little body in my arms. I touched my lips to his warm skin.

This is where the story becomes hard to tell because I remember every detail so well. I remember trying to hold him so still because any small move I made caused him to wince in pain. My heart beating so fast because I was so scared. I remember wishing that I could just run away and be pregnant with him again just so I could have him safe inside me. I remember trying to fit a lifetime of things I wanted to tell him and experience with him in just a few short hours. I remember telling him that I was sorry.. that we tried everything that we could. I told him how much we wanted him and how perfect we thought he was… that we were not mad at him for having to leave us. I told him about his room at home and how crazy his grandparents had gone buying every toy and outfit imaginable for him to wear…. I thanked him for making me a mommy and for fighting so hard to stay with us.

I talked to him about Jesus and Heaven. We told him his Papaw Tommy would be there with him and that he would never be alone. We promised him that we would see him again and that we would think about him every single day until the moment we would all be together…. that no matter what happened, we would never ever forget about him

Benson told him he had the best Mommy in the world and promised that he would take care of me. I will never forget the words he whispered to Luke that day. I knew their significance because I knew my husband’s heart... I will show your Mommy the world, Luke.
Oh, how we wanted to show that boy the world.

I told him not to be afraid that his Daddy and I were there… that everyone who loved him was here with him and that he didn’t need to be scared. That Jesus would hold him when I could not and that he would never have to hurt or be sick ever again. That his heart would finally be whole….and when we ran out of words, we sang to him.

The nurses and doctors waited outside for our signal. I still don’t know how we ever had the strength to motion for them to come into the room but we did somehow. If I could, I would still be there in that room holding him to this day, but I knew… Benson knew… that we had to let him go.

They came in and turned off all of the machines. For the first time, the room was completely dark other than small glow from a nearby screen. Our ECMO nurse clipped off the cannulas and stopped the blood from flowing into my son. His heart was on his own. I knew that we would only have a few minutes or even seconds left with our son.

Our parents and pastors surrounded us in Luke’s room while friends and family circled outside our door and prayed. I knew they were praying for Luke to live and so was I. But more than I selfishly wanted my son to defy all odds and survive that day…. I wanted him healed. I wanted his body whole and the pain to stop. I wanted him to be free.

Our boy…. what a fighter. The doctors and nurses kept coming in and checking his pulse and it was still there. Five minutes turned to ten minutes… ten minutes to twenty and he was still there with us, his tiny heart beating slowly on its own. Luke was still and calm… he stopped crying out in pain and just laid peacefully in my arms. Our tears stopped flowing and we all just began to call out in worship, taking turns singing out in praise. I kept kissing his sweet face, over and over again. It was the holiest moment I have ever experienced in my life filled with nothing but reverence and love. Benson began singing “I Will Rise”... it was the last song my son heard on this earth, sang by the sweet, familiar sound of his daddy’s voice. The resident doctor came in to check his heartbeat once again, and I will never forget the exact words she said looking deep into my eyes, “I am sorry but Luke has died.” It was 12:05am on July 10, 2010. My sweet boy’s broken heart had beat on its own for 45 minutes.

None of us knew the exact moment it happened. He left us peacefully and silently, as if he were asleep. I continued to kiss him until his skin began becoming cold and then I held him tight one last time.

Our sweet ECMO nurse came in. I had to ask what I was supposed to do next. I had researched crib bumpers and video monitor but I had no clue what you were supposed to do after your baby dies in your arms. She said we could hold him or bathe him if we wanted but that they needed to remove the cannulas and close his heart up. He looked so perfect wrapped in my arms and I knew that was the way I wanted to remember him. The last thing I wanted to see was his poor, tired body filled with tubes again. So, I stood up and kissed his forehead and told him goodbye.

Then I looked my sweet nurse in the eyes and we both cried as I placed my sweet, sweet baby in her arms and turned and walked away. Never in my life had my arms felt so empty.

Our families began the task of packing up the little room that we had stayed in for the past week. Gifts, cards and letters that covered the walls and window sills were taken down and brought out to our car. Benson and I walked out to the nurses station that was surrounded by our friends and family who stayed outside our door for hours praying. We were forced to sign difficult papers about autopsies, death certificates and what funeral home would be picking up his body the next morning. It was an absolute nightmare.

I was offered a wheelchair, but I refused. Instead, I walked every painful step out of the hospital and out into the parking garage. I remember Benson opening the car door for me and as I climbed in, my eyes looked into the back seat where Luke’s car seat was perfectly installed. As he climbed in the driver seat and grabbed my hand, I bent over and sobbed.

-----

I’m not here telling this story to make you cry or feel sorry for us. It’s not about that or even us. I tell you this because some people will read this story and believe that God failed us. They will think that because our baby was not given the miracle that we prayed for that our prayers were not answered at all.

THAT IS NOT TRUE.

THAT IS NOT HOW THIS STORY ENDS.

I tell you the most painful story of my life because if ever God was present, it was there in that room that night. He was there and His goodness flooded every inch of that hospital. What Satan meant for destruction and evil… to tear apart my marriage and end our ministry, God took it and used for good. He is still in the business of using it for the good today.

For over four years, I have been paralyzed from the fear of moving forward. I have been terrified that writing about our final moments with Luke would mean his story ended and that there would be nothing more to say. So instead of writing, I stayed silent. I stopped blogging, speaking and teaching. As months went by, I kept pushing back the pain into the far corners of my heart and pretended that everything was okay. I would share bits and pieces of our testimony here and there but I have never shared the details of our last day with Luke. I always held back when it began to hurt.

Now I realize that by being stuck looking back, I was allowing myself and my ministry to become nothing more than a pillar of salt, a monument to what happened in our past. Now, I see that Luke's story far from over and is the constant thread that binds every season of our lives together. I understand saying goodbye is not the end but rather the start of beautiful beginnings. I know that God has more for me in my future than he has ever had for me in my past and as terrifying as that is, I am ready. I cannot wait to share with you how God has redeemed what has been lost and has blessed our sweet family over the past four years. More than anything, I am ready to see what the next chapter of life holds. Surely, the best is yet to come.

Whatever God has for you, it is not behind you. - Beth Moore

Luke's first birthday..

One year ago tonight.. our world completely changed. Our sweet baby boy was born and our journey as parents began. As I look back over the past year and how God has worked in our lives I am so overwhelmed. Overwhelmed with memories of the 12 days we had with our son. Overwhelmed by the support of so many people who reached out and loved us. Overwhemed by the faithfulness of a God who carried us and empowered us to face the impossible....

Wow - it has been a year.

One year ago, I woke up at 4:30am to get ready for our scheduled induction. I was 38 weeks 6 days pregnant and our doctor felt it would be best to induce labor so that I would not go on my own and not be near an equipped hospital. Benson, my mom and I stayed in a hotel in Indiana the night before the induction. I remember stopping to get Krispy Kremes (one of my huge pregnancy cravings!) the night before... it was the last thing I ate before having Luke.

We arrived at the hospital and I was taken back into the delivery room. I remember looking over and seeing the little isolette which helda little blanket and hat that Luke would be placed in once he was born and how real it suddenly became. Our nurse Tiffany was amazing... we started the Pitocin a little after 6am and I started feeling contractions sometime around 8am. The entire day, we sat around and talked while watching the World Cup. Our family came in and out of our room - I was relaxed, happy and excited. Around 6pm, my contractions began increasing in intensity. I asked for something to take the edge off and they gave me Stadol - big mistake. Apparently, I started seeing McDonald's characters and thought Benson was Grimace the Menace.. ?!

Around 7pm I was 7cm dilated and decided to go ahead and get an epidural. Soon after, they broke my water and things began moving quickly. Within and hour and a half, I was fully dilated and ready to push. In a matter of minutes, our room was filled with more doctors and nurses than I could count. I had such a hard time pushing because my epidural was so strong and I had no feeling at all. After over an hour of pushing and the help of a nasty episiotomy, Luke Aaron came into the world with a weak cry. I remember looking down and thinking about how long and blue he looked. Benson cut the umbilical cord and they handed him immediately over the NICU doctors who began to work on Luke. They handed him to Benson for a few moments and began to transfer him to Kosairs. Before they left the room, they looked at me and asked if I had held him. When I said no, they put him in my arms and I kissed his forehead and told him I loved him and that I needed him to fight for me because we needed him to be okay. The doctors pinched his little feet and said "cry for mama" but he was completely unresponsive and turning darker each second. It was in that moment that I knew something was terribly wrong. I knew HLHS babies usually come out looking like any other heart-healthy babies. I was so scared I gave him immediately back to the doctors and they wheeled him away. That would be the first and only time Benson and I held him without any tubes and wires.

You can read about the day of Luke's birth and the hours following written from Benson's perspective by clicking here. It is crazy to think how much we went through in just a few short hours. Needless to say, Luke's birthday was one that we will never forget...

Happy Birthday Sweet Luke! We love you so much and are so very proud to call you ours. I know that you are celebrating with Jesus and that it has to be way more fun than anything I could plan for you here.. my heart isn't sad for you today... it is sad for me and for your daddy and for all the people who love you who are left here without you. I cannot wait until the day I see you again.. until then, keep changing the world little buddy... you have surely changed ours! We love you!

Happy Birthday Cohen!

One year ago today, I sat behind a computer screen 36 weeks pregnant. I had just found out about our sweet Luke's little heart and desperately sought out stories and lives of other women who had given birth to a baby with a heart defect. It didn't take long for me to fall in love with Megan and Brent - a sweet couple who were anticipating the birth of their own little guy who they were told would be born with a broken heart.

So on June 7, 2010... I was one of thousands who kept refreshing the page to her blog, praying and pleading with God that Cohen would be born breathing and crying.... well, he was.

One year ago today, I had no idea that Megan would be the person God placed into my life to be the one who I would "vent" to on the bad days... the one who would email me on the 29th and 10th every month because she knew what living the space between was really like.... I had no idea that she would be the one who I would text when I found out I was pregnant again.... or that I would cry the biggest happiest tears when I finally heard the news that she was too (with TWINS!). I had no idea this girl I have never met would be one of the greatest instruments of healing in my life and that her sweet boy would mean SO much to my family and I.... but, he does.

One year ago today, my little guy was bouncing around in my belly when Cohen was taking his first breath on earth. I had no idea that both Cohen and Luke would share such similar stories or that they would both end up in Heaven together just a few weeks apart. Megan and I often say that we hope our little boys are "best buds" up there together. I had no idea when I saw that first picture this cute baby with dark hair and perfect little lips that he would end up being my son's best friend in Heaven.... but, he is.

So, Happy Birthday best buddy. While you are up there having an awesome birthday party with Jesus know that there are so so so very many people who miss you here. You are so very loved and so very special and I'm so glad to know that you can run around up in Heaven today and celebrate with no tubes, wires or broken heart. You are an amazing miracle and I can't wait for the day I get to meet you and give you the biggest hug and tell you just how you and your sweet mommy and daddy have meant to me.