I wrote these small contemplations a few weeks before my mother was scheduled to give birth to the sixth child of our family, little Sean Patrick. My parents and I had known for about four or five months that Sean had a rare condition called Limb-Body-Wall-Complex. What this meant was that all his organs had formed outside his body, his spine was twisted into a ninety degree angle, and his heart was pumping blood the completely opposite direction. This disease is one-hundred-percent fatal and the longest a baby has ever lived with this disease was about fifteen minutes. The doctors encouraged my mother to abort little Sean. Of course, my family chose life.
It is said that Momma’s baby, our baby, will die. Little Miracle, for that is what I am already calling him, is broken. He is sweet and dear, and already a life-filled miracle, but science says he will not live. Science requires a strong, healthy mass of cells, muscles, nerves, and bones to survive in this world. Little Miracle is not whole. How crazy that a substance as unimaginably beautiful as the soul must be contained in something so material and tangible as the body.
Why must Little Miracle not live with us? Why does the world require that he bring a healthy body with him? Little Miracle is a blessing which everyone says will be taken away. But Little Miracle is beautiful, and though some would say that his death will be a loss to my family, it is not so.
Little Miracle is a gift, but he does not belong here. I do not belong here. None of us belong here. If the Divine desires only to grace us with Little Miracle’s presence for a few fleeting moments, so be it. If He chooses to allow him to stay with us for a longer time, if He chooses to remold his poor, broken body, so be it. That is for our Father to decide. And if He does choose to remold Little Miracle’s body into that of a wholesome, happy baby all will call our baby “a miracle.” But I know better. Our baby, myself, my family, and all others are miracles. Whether Little Miracle lives or dies, from the moment of conception he always has been, and always will be, a miracle. He is precious. He is a gift. And he is beautiful.
On January 26, my little brother was born and quickly surrounded by the five of us kids and my father. Sean fought for my family, fought for life, a glorious hour and nine minutes. And then, as silently as he had entered, he left.
Though he brought much pain and sadness to my family, Sean was also a great blessing. When I wrote this small tribute to Sean I still did not know if he would live or die. However, four months after his birth and death my thoughts on the subject have not changed. Sean is truly a miracle. I am extremely happy he came to us, and touched my family for those few fleeting moments. My mother today says that she would not change what happened on January 26 for anything. Though I am not yet at that point, and though I still do wish that I could hold and look at my tiny little brother, I am glad he is in a better place and I cannot wait to see him again. As my five year old sister says, “Sean is lucky, because he never had to get in trouble.”
Copyright © 2021 Limb Body Wall Complex - Continuing The Journey - All Rights Reserved.
Powered By A Mother's Love