My husband and I have Rylee together and I am also blessed with a 14 year old step daughter named Taylor. Rylee is three and has recently received a diagnosis of a mutation on the EEF1a2 gene. This comes with microcephaly, delayed myelination, thinning of the corpus callosum, seizure disorder, CVI, feeding difficulties, a gtube, and global developmental delay. I became part of JourneyFEST to help parents who are on the same journey we are. The support system is so important to special needs families and being able to have a place to relate to other families has made this journey a little easier to swallow. Each step in our journey I can turn to the JourneyFEST family for guidance and support. I don't know what I would do without it.
My husband and I have two children with special needs. Joe has mental health issues, and Ilse has Smith-Lemli-Opitz Syndrome. I entered the special needs community when Ilse was born. Even though Joe has his issues, we didn't know the extent until last year, so our early years on the special needs journey were all about genetics, g tubes, and keeping germs out of our house. Even though there is a community of other Smith-Lemli-Opitz families, I needed closer and face to face support, so with three other ladies and my husband, JourneyFEST was born. I love JourneyFEST. My friends understand and love my family and me, and I love them. The support is incredible and I do not know how I would live without it!
With each day that passes, I realize that my own experience as a special needs child prepared me for the challenges I face with my two special needs kids, Joe and Ilse. At 15 days old, I experienced a massive brain hemorrhage. I was subsequently declared brain dead at two different points in time and was once removed from life support. My mother was told that I'd be dead within 15 minutes, but clearly, as you might have guessed by now, I'm still alive. Miraculously, through God's grace and amazing mercy, my brain began functioning again. Although I was left with a severe case of Spastic Dyplesia Cerebral Palsy, I have been able to take advantage of the benefits of various corrective surgeries in order for me to become ambulatory. Each time I underwent surgery, I was required to learn to walk all over again. All told, I learned to walk four times. As I got older, I faced a number of educational challenges and by the time I was entering the 5th grade, I did not know how to read, write, or do math. My parents were told that I would never be able to learn anything, but instead of believing that, my parents pulled me out of public school and home schooled me through high school, which I graduated at 19. Then I graduated from the University of Texas at Dallas with a Bachelor's Degree in Historical Studies. Currently I am serving on the Board of JourneyFEST and I teach special education in a North Texas school district. If there is one thing I would encourage special needs families to keep in mind as they deal with the needs of their children, it is this: No matter what your child's difficulty or medical situation is, don't put limits on him. Don't allow the diagnosis to dictate what you are willing to try. Push your child and see where he wants to go. I guarantee you that he or she will be able to achieve more than you thought possible. It'll be worth it.
Two additional Board Members and new Officers will be elected soon.
JourneyFEST @ 2013