I have been given the amazing opportunity to Run a Fundraising Ragnar Race for Steel Magnolia Moms. Please help me meet my goal for this cause!
Please let me give you my background how I began this journey. In 2004 life was all going to plan. I had just given birth to my first child (Cole). He was happy, healthy and we were visualizing our future raising our child. November 18th 2004, 4 months later, we experienced Cole's first Seizure and our real journey began. I immediatly started looking for answers to what was happeing to our beautiful baby boy. I scheduled appointment after appointment with specialists in Houston. Little did I know just how frustrating and long the journey for answers would become. Cole is a handsome boy that looked completly normal, but was not hitting milestones for his age. Doctor after Doctor would tell me that I was doing the right thing and that we never may find answers to what made him so special. There was no textbook or Medical journal that described Cole. A diagonisis became less and less important, we targeted our focus on making him healthy. He has always been our little angel that can change the world with his smile. Fast forward to 2016. We had a follow up neurology appoinment and were told, "by the way we received the results to Cole's newest round of genetic testing and he has a mutation on his SCN8A gene, we don't know much about it, Google It." Finally our diagnosis. SCN8A. GO. A very rare seizure condition, also know as the "Cute Syndrome" you can go to SCN8A.net or thecutesyndrome.com to learn more.
We were chosen to have Cole bless our lives. Life with a special needs child can make you really appreciate the small victories. It can also harbor feelings of isolation, guilt, heartache, frustration, and so many more.
Why am I running? Cole is the beginning of my love for running. Cole NEVER slept, one of the characteristics caused by SCN8A. He would be up so early that I decided to take advantage of the early mornings and would take him jogging with me. I run because it is my "ME" time. I'm running this race to help other mothers get their "ME time". I'm running to help other Mother's have a safe, familiar sounding board when their Doctors tell them to "Google It" for delivering life changing diagnosis. The Steel Magnolia women all have different stories and different life paths but we all have one common bond and that is a child with special needs. I can tell you that we are all truly blessed to have our special kiddos in or lives and truely blessed to be able to share our experiences with each other.