My whole world fell apart in that moment. I don’t let my mind go back to that night very often. It was suppose to be one of the best experiences of my life; and now I’m filled with memories surrounded with fear and heartache.” ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀ ——————-⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀
“Following a healthy pregnancy, my daughter Josie was born on March 28th. She immediately stole our hearts. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀
After delivery, a nurse took Josie for a bath. Once they had been gone over an hour, I panicked and called the nursery. The nurse hesitantly said she would come talk to us soon. My heart dropped. I knew in that moment something was terribly wrong. A doctor entered the room and said Josie had a seizure during her bath, and she was in the NICU. My whole world fell apart in that moment. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
Josie ended up spending 59 days in the NICU. During those days, I watched my tiny baby seize constantly. Numerous medications failed and left Josie so sedated she needed oxygen. I felt helpless. During those days I mourned the healthy daughter I thought I would have. Josie was 7 weeks old when genetic testing showed she has a mutation on the KCNT1 gene; causing a very rare and severe form of epilepsy that is resistant to treatment. The prognosis includes other health issues, profound developmental delay, and shortened life expectancy. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀
Josie is growing and thriving, despite it all. She is learning new things and is happy. I have to hold my baby as she seizes everyday, but I choose to focus on the good moments instead. Like when she smiles , interacts with her brother, finds her voice, or tries to scoot with all of her might. ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀⠀ ⠀⠀⠀⠀⠀
My daughter is not a number, and she is not a diagnosis. She proves everyday that she is a miracle and a fighter. Josie has taught me how to truly appreciate life. I’m thankful God trusted me with such a special soul. I know her journey will not be easy, but I will make sure it’s filled with love and happiness every single day.
Josie
