Following is a story I wrote when my nephew, Evan, passed away of SMA within a few months of birth. At the conclusion of the story is a song I wrote and performed at Evan’s funeral.
I am not sure the reason that I feel it so important to write my experience with my nephew Evan. I suppose that in part its purpose is for others to know the inspiration for the lyrics of his lullaby that I have written. Or perhaps it will serve as a reminder of just how lucky we are to have known him. But in all honesty I think the purpose is a little more personal. I learned a lot from Evan and the way that he touched lives. I hope that you too will experience the emotions that I did as I share the story with you from my point of view in the final 48 hours.
On Friday the 28th of March I received a phone call from my mom late in the night. She told me that Rachel had brought Evan into the hospital and he was diagnosed with a very serious disease. Immediately I felt humbled by the emotion that flowed into my heart. I went to bed that night with a prayer in my heart hoping that I could be of help in some way.
The following morning, Rachel called me with the news that the original diagnosis of six months was shortened to just a few days and that if I was going to meet my nephew then I would have to do so very soon. I knew that I would have to make plans immediately to get to Sacramento. But even more prevalent in my heart was a feeling that I should be very observant in all that will soon happen. Thanks to the help of my dad, I would be able to make the flight to California with him and my brother Kyle. We would fly out of Las Vegas on Sunday the thirtieth arriving just before midnight.
On the way out to California it was a dark and very quiet flight. I remember very clearly looking out of the window and getting lost in the shining of the stars. I had just finished reading a book of astronomy and while on the plane I thought how strange it is to have an object so distant pierce my heart so deep.
Our original plan was to go straight to our hotel from the airport, but upon exiting the plane I had some voice messages waiting on my phone. They were from my sister Stacey and they warned us that if we were going to be able to meet Evan, we should do so immediately. Also, I was told that Josh was waiting for my dad and I so we could join him in naming and blessing his baby. We entered the emergency entrance of the hospital just after midnight. Stacey and Linda were waiting by the doors to show us the way. As we were navigating the halls of the hospital, I remember so clearly suppressing an urge to run. I wanted so bad to be there with Evan and to support Josh and Rachel. Because it was so late, the hospital was quiet and dark and seemed so abandoned. It remained that way until we reached the corner room of the sixth floor. From that room seemed to flow an overwhelming amount of life, light, and love.
Entering the room, I remember feeling very nervous. I was not sure what to expect. But as I came around the hanging white curtain a beautiful baby and a very proud young mother met me. It could not have been more inviting.
The hospital room was small, but manageable. There were chairs and makeshift beds surrounding the walls. In the center of the room was a very small but elevated bed. There were tubes and wires dangling everywhere, each of them making their way to Evanâ€™s little body.
Rachel, obviously relieved that her dad and brothers made it in time freed an arm to give us hugs. She immediately instructed us that she would like each of us to spend some moments alone with Evan. At first I was a little nervous, but as the baby was left in my arms and the room was emptied, I felt such a warm feeling.
I remember holding his little body very close and careful. His little arm, which was very weak by this point, would tap on my chest every once and a while. I felt saddened when I reached for his little fingers and they did not clutch like every other baby I had ever held. The tubes that were taped to his little face were also heart wrenching. But it was at this heart wrenching moment that every emotion was turned upside down. After laying in darkness for so long, Evan slowly peaked from under his eyelids. His eyes cautiously opened and revealed very big and beautiful dark eyes. But it was not the color that struck me the deepest, it was the incredible sparkle that they shared. Instantly it brought me back to the airplane flight and being lost in the stars. Just like the stars, his eyes pierced my heart. But instead of floating high in heaven, this time I had the sparkle in my arms. I will forever thank Rachel for allowing me to spend some time alone with my nephew.
After my father and kyle had some personal time with Evan, the whole family was again brought into the hospital room. At this point the room consisted of Evan, Josh, Rachel, Linda, Dale, Kyle, Karen Harris, Julianne Harris, Stacey Eaton and me.
On the advice of close friends, we decided that Evan Harris should be given a name and a blessing in the hands of the Priesthood. Josh, Dale and I surrounded Evan laying our hand on his head and Josh authorized a powerful and humble blessing upon Evan. A blessing so honest and pure that it could only be given by a meek father to his needful son.
The remainder of the evening was quiet and somber but had such a feeling of peace and serenity. After an hour or so, Dale, Kyle, Stacey and I left to a nearby hotel. Karen and Julianne retired to a waiting room. Rachel and Josh found place on the beds in the hospital room. And Evan slept in the arms of his Grandma Linda.
Excuse me for a personal reflection, which is not to take away from the focus of this story, but is meant to show one of the many lessons I learned from Evan. Upon reaching the hotel and finally retiring for bed, I looked over to my dad and remembered how grateful I was for him. Like Evan, I was near death very early in life. How grateful I am to have beaten my disease to have more time with my dad in my life. Thank you Evan for reminding me of that miracle.
We did not know what to expect the next morning when we called the hospital. When I finally worked up the courage to call my mom, I was informed that the night was long and difficult but uneventful.
My dad, Stacey, Kyle and I made it to the hospital about 10am on the morning of March 31st. When we made it back up to the room we were met by a very tired and worn out young father, obviously weighed down by the circumstances.
We spent most of the day moving between the hospital room and the waiting room. As doctors came in to perform different tests on Evan I was not able to watch. I would leave the room because it was too hard for me to understand. However, I reminded myself again and again that each test would actually decrease the amount of pain that he was already experiencing.
The hospital we were staying in had a tradition they would follow. Each time a baby was born, the hospital would play Brahmâ€™s Lullaby over the intercom system. I can see the beauty of celebrating each life, but it felt so painful each time we heard it because we knew we were losing our baby soon. I was further saddened when I heard that Evan had never received the song for his birth because he was born at 1am. The hospital did not play it due to concern of waking the other babies.
The next six hours consisted mostly of all of us surrounding Evan and trying to do anything we could to comfort Rachel and Josh. There was a strange fusion of feeling in the room. Part of me was hoping for his life to be extended so that we could enjoy him. But another part of me silently hoped that his passing would come soon so as to escape the pain. But the overwhelming emotion in the room was that of peace and faith. There were so many prayers being offered for Evan that merely association was blessing us.
I suppose the hardest time of the day was the late afternoon and early evening. Evan went through a cycle. He would breathe fine and his heart would beat well for nearly two hours. Then all of a sudden all of his vitals would drop and he would begin to lose color in his face. The room would go silent as all of us held our breath along with him. Never knowing if this would be the last time, Rachel and Josh were forced to repeatedly prepare to lose their son. My heart broke each time I heard Rachel whisper,â€ My Baby!â€ and Josh would sigh, â€œMy boy!â€
By this time I had determined that I would write a song so I wanted to be sure and properly represent the experience. I wanted Evan to have a lullaby too. One that was written especially for him. I was very keen on listening to phrases and touching moments throughout the day. Perhaps I should note a few of those now.
After one of the close call moments, I recall Rachel looking into the face of her newly revived son and saying,â€ He doesnâ€™t want to leave. He likes it in my arms too much.â€ I reflected on what a beautiful thought that was. His little heart was depending on the heart of his mother.
Another special time was shared between Evan and his father. It was clear to all of us that Evan was in a great deal of pain. His vitals were dropping dangerously low and there was little that any of us could do. He was laying in the arms of Josh. Very quietly, Josh began to whisper into the ear of his baby boy. He told Evan of all the excitement that the new parents felt when they were preparing for the birth of Evan. He talked about the classes, he told of the books that were read and the plans that were formed. Soon, Josh had all the room as an audience and we laughed as the stories were shared. Amazingly, Evan seemed so pleasant while sharing that moment with his dad. His vitals were all perfect and so was his color. It was a very special moment.
Unfortunately, it is already known how this story ends. Just after 7 pm, Evan lay sleeping in the arms of Josh. Rachel was nearby comforting them both. Evan stopped breathing again. We all gathered around the young family offering hands of support. Whether my eyes were closed or I was just too afraid to look, I donâ€™t remember. But after a few moments, Rick announced that the vital signs had all dropped and the baby was lost. Collectively we cried and kneeled together to give thanks for our time with Evan. We also asked our Father in Heaven to now welcome him back home and asked that we would be able to live worthy enough to be with him again.
I will forever be thankful for the moments that I had with Evan. I do not believe that lives are defined by length. Quality of life is marked by love, service, and purity. Evan was an immediate master of all three. I hope that Evanâ€™s Lullaby will serve as a token of his beautiful light, a tribute to his untainted life, and as a gift to others so they too can feel his glow.
Evans Lullaby – Written and performed by Brian Stucki