People always say your life can change in the blink of an eye. For my husband and I, this couldn’t be more true. After having three healthy children, our life forever changed when we found out at 17 weeks pregnant that our “Accidental Blessing” (#4!) had SEVERE brain and head malformations that would lead to him having, “No quality of life and end up a vegetable.”
Those words were told to us by multiple doctors in specialties like Perinatology, Neurosurgery, Neurology and Medical Genetics. Those words haunted me and have been etched in my soul. We were given the choice of termination, multiple times, but knew that this baby’s life was given to us as a gift by God and we would cherish this baby until God chose to call him home.
Pregnancy should be a happy time. A time to rejoice in the life that is inside you, growing, forming into the little person that is a perfect combination of both his mother and father. A time to take in every hiccup, kick and movement. A time to prepare a nursery, celebrate with baby showers, and dream about what kind of parent you will be to this perfect little human who was fearfully and wonderfully made. This was not my pregnancy……
My pregnancy, like so many others that aren’t publicly spoken about, was filled with fear.
Fear that I did something to cause these issues. Fear that the last time I felt my baby move would be the last. Fear that I would not get to hold my baby alive. Fear about all the unknowns that comes with having a child MISSING part of his brain.
Would I be able to care for this baby? Would I be able to love this baby like I loved my other three? Would this baby even survive this pregnancy, birth, and multiple brain surgeries scheduled immediately after birth?
This, for most people, would be too much. The stress of so many unknowns would likely steal more than just a happy pregnancy, it would steal any and all joy in life! But me? I had to choose right away what my hope was in. My hope was in my faith.
I put every fear in God’s hands. I choose new doctors who gave me information on my baby’s diagnosis instead of doctors who only choose to disclose the bad. I choose to accept this baby for everything he was and not for what he wasn’t. I chose to see that I had been given a platform. A platform that could change the way people see genetic and ultrasound testing of unborn babies. A chance to show others that FEAR, would not rule over me and with the right support, anything is possible.
I choose to do what I do best, write and inform, and I started a Facebook page just for our baby. A page I could go to and inform all of the people supporting us and praying for us about everything we were going through. A page I could express my feelings on, whether they be joy or sorrow. This page was my therapy! It helped me so much, and it allowed people to be a part of our baby’s life, no matter how short. I knew this baby would make a difference in the lives of others and this was my way to make sure that happened.
Our precious Cory, was born full term, weighing 9 pounds 5 ounces. His screams after delivery were the sweetest sounds I had ever heard! He needed absolutely no support from any device, even oxygen, and he made time stand still in that operating room. His team of specialists were amazed that he was doing so well! I only got to see him for a brief moment before he was transported to Children’s Hospital Los Angeles for his first of two brain surgeries, but what I did see was pure perfection! It didn’t matter to me that he was born with a sac attached to his head that was twice the size of his head and a hole in the back of his head (Occipital Encephalocele), and it didn’t matter to me that he was missing almost all of his cerebellum (Dandy Walker Malformation). What mattered was that he was alive and thriving in that moment! He had already beaten the odds and we knew he would continue to do so!
Cory is now almost 2 years old and he is a living, breathing, walking, running, climbing, talking (talk-backing) MIRACLE! He has a few very minor setbacks (Hydrocephalus with a VP Shunt implanted in his brain since he was 10 days old), but he is perfect in my eyes. He is everything and more than what we were expecting. Even his own doctors that have oodles and oodles of experience are baffled at his remarkable progress.
Life is not easy with having four active and crazy children, but we manage. Three therapy sessions a week for Cory, as well as sports and extra activities for the other three take up almost all of my energy, but my number one job is making sure Cory knows he is no different than anyone else and that he can do ANYTHING he puts his mind to! This goes for my other babies as well.
We don’t really know what we’re capable of doing as mothers until we are thrown into it! What makes us amazing isn’t how we get through it but what changes inside us to be able to pull others through it as well!
Lindsey — Guest Writer