How We Met:
I met my husband when I was thirty-seven years old. We connected on a website called Christian Café. After two and a half years, we were married on a sunny Florida day. Within six months, my doctor’s office confirmed we were going to be a family of three.
So began our love story. With stories of happily ever after in our minds, we were filled with joy at our baby news.
Little did we know what was in store for us.
Boy Or Girl?
After four months of wondering, we were excited to find out if our bundle of joy was a boy or a girl. I wanted to prepare by decorating the baby room and buying cute little clothes for the new addition to our family.
The gender reveal turned into something quite unexpected. Yes, we found out we were going to be parents of a boy, but we were unprepared for the revelation our child had a potential problem. His arms and legs weren’t growing. A series of doctor’s appointments followed to determine the cause of our son’s challenges.
A rocky road faced us. How would we hold up? One thing I knew; I was not alone. When I was 29 years old, I gave my life to Jesus. He gave me peace in my soul. Over the years, I’d seen Him come through time and time again. Those early trials prepared me for the battles which lay ahead.
Hope & Faith
Determining my son’s diagnosis became a guessing game. At one appointment, a healthy outcome was ruled out and replaced with several potentially life threatening conditions. Like a bad case of Russian Roulette, my son’s odds for life were not good.
Just as all hope seemed out of reach, I received a peace that passes understanding. Despite the predictions of a life limited to mere minutes for my son, my heart calmed. Believing for the best, we named our son, Samuel, which means God has heard.
As the months passed, I clung to hope. I heard of stories impossible situations which would uplift my faith. A child diagnosed in utero with Down’s Syndrome would be born with no complications. Or a child having a diagnosis and except for a few issues, the baby was fine. I also heard of children, despite having a challenging diagnosis living joyous, happy lives.
Where would my child fall on this spectrum? Hope told me he would have no complications. Doctors told me to expect a “not compatible with life” diagnosis. Faith told me to listen to everyone, but to watch what God would do.
A Little Baby is Born
By my thirtieth week of pregnancy, my doctor placed me on bed rest. On my thirty-first week, I ended up in the hospital leaking amniotic fluid. Expected to deliver in three days, a mini-miracle happened, and days turned into weeks. Delighted Samuel would have more time for his little lungs to develop, I prayed I would hear his cry at birth.
I never gave up hope. Peace surrounded me like a blanket, not making sense in the midst of my circumstances. The doctors scheduled a C-section in my thirty-fifth week to avoid an infection. Just weeks after my fortieth birthday, my miracle was born. I did not hear his cry, but I saw his scrunched up face with his mouth open and tears streaming down his cheeks before he was whisked away to the intensive care unit.
My heart was whisked away with him. My heartbeat lived outside my body in my son, and my life would be forever changed. I became a mom to a miracle. I became a mom to a child with intense medical needs. But, I did become a mom. My “not compatible with life” son would live to breathe another day. And so we lived, day by day.
My heart is to offer others hope in the midst of unthinkable circumstances. To share a belief in miracles, proving nothing is impossible with God. And in the pages of my memoir, Miracle In My Living Room, hope abounds.
To continue to follow our son’s journey with Thanatophoric Dysplasia Dwarfism, go to www.facebook.com/amiracleinmylivingroom or subscribe on www.miraclemann.com. Special thanks to readers from Special Books By Special Kids for following our son. (www.facebook.com/specialbooksbyspecialkids.) If this post has touched you, please leave a comment. I read each one.
*Samuel has a rare and lethal form of dwarfism called Thanatophoric Dwarfism. He is one of only twelve survivors worldwide. He needed to be intubated at birth and lived on a ventilator for several years. He has exceeded expectations in many ways and is now eleven years old.
Written By: Evelyn Mann
Author: Miracle In My Living Room:The Story of a Little Mann