When we live in a world where everyone dies, what is the meaning of life?
“You are having a little girl,” the nurse quietly said to Emily and me. We both looked at each other, then looked at the nurse with awe-struck eyes. We couldn’t believe it: we were going to have a little baby girl in April! My mind began to race 100 miles an hour, as I was beginning to feel the first-time nerves of having a daughter. Emily laughed at me as she saw my face go from smiling with joy to stiff with panic.
The nurse asked us to wait for a few minutes for the doctor. We were excited to have found out the gender and the anticipation of meeting our little girl was overwhelming. I took a picture of Emily sitting on the patient’s table as she was swinging her legs and smiling from ear to ear. She looked beautiful and she was glowing.
The doctor came into the room, looked at both of us and then locked eyes with Emily. She paused, took a deep breath, and said, “Your little girl has Holoprosencephaly (Ho-low-prose-zen-sef-a-lee).” We were confused, shocked, and deeply concerned. We had questions flooding into our heads like: “What is Holoprosencephaly? What causes it? What does it mean for our daughter?” The doctor said, “Holoprosencephaly is when the brain fails to divide into two hemispheres, resulting in the death of the baby.” She paused. As we sat there frozen, the doctor said these heart-breaking words: “Your little girl is not going to live.”
One of the first questions that came into my mind was: is it worth having this baby at all? I wanted to hit a restart button like you do in a video game. I wanted a second chance at this baby thing. I wanted a redo, a mulligan. It was surprisingly difficult to find the value in taking a baby to full-term that is inevitably going to die. At the same time the inner “Christian” voice inside was saying, “Michael, this baby will be a miracle baby. If you have enough faith, your child will be healed and it will bring God glory!” The conflict between these two sides was filled with shame. I felt shame for thinking that my child was not worth it and I felt shame for not having enough faith.
I remember when the doctor told us about the option to have an abortion. We asked many questions about the quality of life and as the doctor answered those questions, I felt surprisingly tempted to terminate. As a Christian, I was trained that abortion was wrong and evil, but in the moment when I found out that my little girl had Holoprosencephaly, I felt like life didn’t matter. I felt like my little girl’s life didn’t matter and I felt like there was no point in living. I remember thinking to myself, “I don’t want this baby; I don’t want to keep this baby.” But God rescued our daughter from those sinful thoughts in our hearts and we decided to keep her. We called her Blakely.
I was angry at God and I spent many months yelling at him. I was like a 2 year-old who dropped his ice cream on the ground. I cried, I kicked, and I screamed. I felt like God did not love me. I felt like He was my enemy and that He had betrayed me. I questioned Him and doubted Him. I often felt like God was punishing me and cursing me because of my sins. I wondered if this was His way of getting back at me for all of my mistakes.
Even though the months leading up to Blakely’s birth were dark, heavy, cold, and grief-filled, we were carried by our community, church, family, and friends. They listened to us complain, they cried with us, and they sat with us in the mess. They stepped into our darkness and kept us safe in our blindness. We would have never made it through if it wasn’t for these people.
On April 27, 2017, Emily and I drove to the hospital without a baby seat. We cried on the way there and it felt like we were going to a funeral. We were scared, we were sad, but with all of our hearts we were hoping that she would live. The following day, at 3:53 in the morning, Blakely Elizabeth Puckett was born. She was immediately placed on Emily’s chest and both of us began to cry. Blakely was silent and she was staring right at us, blinking slowly. Through our choked-up voices, we said to her over and over, “Blakely, we love you!” What felt like a lifetime was a few minutes, but in that moment we thought Blakely wasn’t going to make it. Then she cried, she breathed, and she cried some more! Her cry was one of the sweetest sounds I have ever heard. Blakely was alive and we felt like she was going to make it.
Our families came into the room to meet Blakely. Everyone was crying and everyone was rejoicing. We read her books, we baptized her, and we worshipped with her. It was a holy moment and it felt like the whole world was standing still. It was a moment when my cold heart melted and I realized that Blakely’s life matters. I was humbled as my heart shifted from not wanting her to deeply falling in love with her. I remember thinking to myself, “I want Blakely. I love Blakely. She is my daughter and I am her daddy; she belongs to me!” When I met Blakely face to face I was filled to the brim with love. I felt lucky and I felt like I had won the lottery. There were not the things that I expected to feel from a baby with Holoprosencephaly. But this is the mystery that Blakely’s life carried us through: the mystery of death and life existing at the same time, the mystery that a small baby, disabled and condemned to live a short-life, could melt a room of adults and change their lives.
If death exists, what is the point of living? If life exists, what is the point or purpose of death? Blakely forced us to live and exist within this paradox. She forced us to sit in the uncomfortable reality that we all die, but also we all live. She forced us to reconsider what we deemed to be a meaningful life. Before Blakely, I thought that a meaningful life was being a good person, going to church, getting married, working hard, having kids, retiring, and then quietly dying in your sleep. But Blakely showed me that the meaning of life has nothing to do with how good we are, how smart we are, how gifted we are, how long we live, or how much we do, but has everything to do with love. Life is meaningful because of love.
Blakely lived a hard 9 ½ months. The majority of her life was spent in the hospital with tubes, buttons, needles, and oxygen machines. She had hundreds of seizures every week. She had to eat through a g-tube. She had to breath through an oxygen mask. She had to be medicated around the clock. She was fully dependent on others to take care of her. She allowed people to love her, she allowed herself to be loved, and by doing so she brought meaning to my life, to Emily’s life, and to all the lives that surrounded her.
Even though her life was hard, she would smile. She would hold my hand and stare into my eyes. She would snuggle and she would let me hold her as much as I wanted. She let me into her life and allowed me to be part of her. She beat the odds and lived well. She gave the world all she had and it was enough. Her life was a high concentration of human love. When you were around her, you couldn’t help but feel loved. Everything she gave was powerful because of what she was walking through. When you felt Blakely’s love it was like an ancient, magical, indescribable love that was more meaningful than an average human being’s love. To be around her was like being in the presence of something other-worldly. This is the power of the weak, the needy, and the ones considered unworthy of life. They have the gift of bringing people into the presence of God. Worship is the best way I have been able to describe life with Blakely: Blakely was a worship leader and her life was mysteriously and overwhelmingly meaningful.
On February 18, 2018, Blakely died in the arms of her mommy. On her death day people came from all over the country to say, “Goodbye.” When she died, the room was flooded with tears. The doctors cried and the nurses cried. All across the world people mourned Blakely’s death. They all had fallen in love with her and they all missed her. She was one of the most loved human beings I have ever met and in the darkness of death there was love.
It is fascinating to think how a short life and such a small human being has made such a big impact. Death’s attempt to make life seem meaningless actually was the tool that love used to make Blakely’s life meaningful. The death of Jesus was the way God used to redeem mankind. God loved enough to give away His Son so that you, Blakely, and I can be saved from sin and death. When death tries to stamp us out, we actually come face to face with God Himself. It is Jesus and His love that makes life meaningful in the face of death. We see love when we see Jesus dying on the cross, and I saw love when Blakely died from Holoprosencephaly.
Blakely proved that true love is not earned, achieved, or deserved but rather given. Love is placed upon someone whether they want it or not. Love is given with no need for a return. Emily and I did not choose Blakely. As much as I would like to believe that out of all of the children in the world I would have chosen Blakely, I know this is false. I wanted a healthy baby. I wanted a child that would in return say, “I love you too, Daddy.” I wanted a child that would get married, have children, and take care of me when I am old. If I could choose I would have chosen a child like this, but Blakely was placed upon me. Blakely was given to me without any need for a return. I did not earn her, achieve her, nor did I deserve her, but she was given to me. She was mine and I was hers. She changed my life because she brought me into the presence of God. Blakely did this by loving and allowing herself to be loved. This is what Blakely did as a little baby girl. She lived out her calling as an object of God’s love, reflecting His love to the world.
So what is the meaning of life when we live in a world where everyone dies? Blakely in her life showed me that the meaning of life is found in being weak, needy, and human. It is found in the everyday giving of permission for people to come into your life. It is found in the moment when we let down our guards and step into the uncertainty of whether or not people will love us for who we are. We must let our true selves be seen no matter what we have done, where we have been, or what our stories tell. It is in this breathtaking surrender that God’s presence is always mysteriously revealed; we realize that in our weakness God still loves us because of Jesus. Realizing that we are loved enables us to love when we live in a world where everyone dies. The meaning of life is found in Jesus: to be loved and to love.