CDH International’s featured patient of the week is CDH angel Christian Casey Copley. Christian’s mom, Amanda Bowman, had this to share about her son:
“I want you to know that…
September 23,2020 it felt like a normal delivery from what I remember delivery feels like, contractions and the back pain. The pain of labor was immediately buffered by that overwhelmingly feeling when a mother holds her baby first time.
Little did I know that on September 23 2020, our lives would be forever changed. I didn’t know that those few seconds after you were born would go from happiness and complete joy to absolute panic and fear.
I never thought that the song that I played and sang to you in my belly, would be the song that would play at your service, a service I never thought in a million years we would have to plan
Our sweet, perfect baby boy Christian, grew his wings September 24,2020. 18 hours after he was welcomed to this world.
He was undiagnosed until birth with a left sided congenital diaphragmatic hernia. It is a rare birth defect in which the organs go through a hole in the diaphragm, which pushes the lungs and heart to one side. He needed to be placed on a special machine called an ECMO, which wasn’t available to us. He was airlifted to Charleston, being unequipped to care for him, he never stabilized enough to be transported again. We had to say good-bye to our precious little boy.
I had so much information thrown at us that I just couldn’t make sense of any of it. My whole pregnancy was completely normal, moving and heartbeat perfect.
All Within 18 hours, our son was born and not breathing, airlifted three hours away. Two hours after giving birth, we made the long drive to see him. I cried, prayed, begged. A millions of thoughts raced through my mind; was it my fault? All in 18 hours we had too much to process the birth; this awful defect that took our beautiful baby. If I had known prior to delivery, we could delivered at a hospital equipped to care for him. The thoughts and what it’s is absolutely soul crushing.
We soon made the decision to take him off of the ventilator so he wouldn’t suffer anymore. I feel so broken down and lost. I keep having flashbacks of that night, the doctors coming in telling us about CDH. I didn’t understand anything, everything was a blur. I cried and prayed the whole time to let him stay with us.
He fought very hard and was so very strong. We got to kiss him and tell him how much we loved him and it was okay to go and how God would wrap him up in his arms.
It’s been so hard trying to move forward, everything reminds me that he was supposed to come home with us and his big brother and sister. I had his room completely ready. It continually breaks my heart. I’m trying to be strong. I know my sweet baby boy is not in pain anymore but the what ifs? And wondering how he would’ve laughed or smiled or if he would’ve liked trucks or puppies is killing me. This is a pain no one should ever have to experience and I wouldn’t wish it on my worst enemy.
I find some comfort in knowing Christian is in Heaven watching over us and that my mom is probably spoiling him along with so many of our loved ones that now call Heaven their home. I’ll forever be his mommy and nothing can change that.
Hours by your side, telling you how much you are loved. Begging, praying, pleading for you to come home with us.
Then we left the hospital empty handed. It’s indescribable, the sadness of that feeling so I won’t even write that down. I just recall the rush with having Cayden and Cynthia, of new parents proudly exiting the hospital with their new babies strapped into brand new car seats… how I so wanted that.
Once back home, at night in the silence and the walls of our house buried me alive, each night as flowing milk soaked my skin and my womb still moved from phantom kicks. I would wake in the dark to sounds of cries but he was never there.
I want you to know that I lost my baby, and after losing a baby, I lost many other “things.”
First I lost my dreams. I had dreams of a beautiful birth with a happy ending. I had dreams of cradling and feeding a newborn. I had dreams of a gathering; a celebration of the life I co-created and birthed. I had dreams of love and the joys of having him with us, our family.
Then I lost myself I lost my identity. I don’t know who I am or what I deserve. I was supposed to be a mother to this beautiful living child. I don’t know why I am still breathing when my baby never took his first breath of life. I now know that nothing is ever promised. I now know the nightmare, the darkness of death and the pain of loss; the pain I now live with every single day of my “new” life. I have seen and lost so much, and yet, I am filled with wisdom that I did not want. I am no longer and will never be the woman I was before. Truth is, I’ll never be the same.
Finally, I lost what will never be. Every day that I am alive, I will lose moments and memories of a life that I will never have. I will never know my baby’s smile or my baby’s voice. I will never see the seasons of his growth and a fruitful life. I will never know and don’t know, and that is the most painful thing of all. My baby is a mystery that I can never solve.
Losing a baby is backward; parents are not supposed to outlive their children. And giving birth to death doesn’t make any sense. When I held my baby for those first few seconds he was so small, too small for this big world And he was cold, so very cold. And he was beautiful, so very beautiful.
I ask that you hold space, not just for me, but also my baby. Remember my baby and me on Mother’s Day and Casey on Father’s Day, and every other family holiday. Remember my baby and Cayden and Cynthia, while you are holding and hugging tightly onto your baby. Remember my baby and me on your baby showers, the births of your babies, and your baby’s first, second, third, and forever more birthdays. I ask that you know that our world celebrates life more than it acknowledges death.I ask that you know that when a baby dies it changes lives forever .I ask that you know and remember and say my baby’s name Christian Casey Copley. Please say his name for the silence of his cries. Please say his name to give him a voice because I am tired. I am exhausted, and my heart is incomplete, constantly shattering in hope and doubt. When I am distant, please show me that you care. When I am present, please hug me and tell me that you are there. It is not that I isolate myself from you, but that I feel life has isolated me: from joy, from peace, from rest.
All I know is that I must survive this new life of sorrow, and even so, it is painful to watch life pass me by without the one person who should be here. There is no cure for grief, and I do not want to be cured. I want to be loved as a friend, as family, and as a mother. My son died, but I am still his mother. This new vision of motherhood looks nothing like what I expected…NO…. I do not tote an overflowing diaper bag for him, but I still quietly carry him with me every day in heart.