The Spirit Cannot be Denied!
My husband and I are 18 year olds who just recently got married. We were young but we are making great progress towards creating a happy, healthy and successful life for ourselves. Right now my husband is away doing a military exercise and I am home preparing for our first child. It seems as if we are starting to figure things out. That was of course until I receive the shocking news four months into my pregnancy. Unexpectedly at a routine clinical check-up, my doctor delivers the devastating blow to my heart. He informs me that my child would be born with severe brain deformity. “Are you kidding me? You can't be serious. I am in shock right now. Total disbelief! How could this be? What did I do to deserve such a twist of fate? My husband and I are healthy, why us we are so young? And how in the world am I ever going to be able to care for a special needs child? I’m not sure of myself to raise a child without disabilities. I'm freaking out. "God", I need someone to talk to! I’m alone with in a new place with no friends or family to lean on. I’m in a very dark place filled with fear and worry.
See that was me six years ago as I reflect it was all really a blur filled with worry and fear. Of course I do not share those same sentiments. Since the birth of my son, Jayden Nogueras, my husband and I decided we would do whatever we had to do to take care of our child responsibly. We made a concrete decision to provide Jayden with all the tools he needs to live a full life. And so we took a very proactive approach to things. As our former worries quickly turned into fierce determination, we immediately began to seek out the best specialist in our surrounding area and end up finding an amazing place for care and therapy. One of those places is The Children's Hospital of the King's Daughter. It was here where our son would receive some of the best treatment available for his conditions.
Next, to arm ourselves as much as possible with information on how to raise a special needs child, my husband and I literally went to every parent seminar in the community. We even visited an autism seminar when my son was showing signs of behavioral problems. Jayden is not autistic but we nonetheless wanted to see if there was something new we could learn that could help us raise our child. At the meeting we met a member from Team Hoyt who graciously invited us to a Team Hoyt race. I am proud to say that our family has been hooked ever since!
My son Jayden has a chromosome disorder is called 1p36 duplication. It is a very rare disorder. He also has cerebral palsy, septo-optic dysplasia and is legally blind. Nonetheless, even with all these serious complications, our son Jayden still loves to compete in the long distant running. Jayden first started off as a rider in 2010. A rider is someone who sits in a specialized jogging chair and is pushed during a race. Jayden did this for about a year until his courage, strength and hard work elevated him to the status of a runner in 2011. As Jayden completes more and more races he realizes the feeling and importance of finishing a race and has set his sights on becoming a pusher one day. We believe he can do it!My husband and I have learned a great deal from raising our special needs child. Realizing how hard the two of us had to work in order to get ourselves prepared as parents to raise a special needs child. Now watching our sons' bravery and efforts to literally put is best foot forward in all he does, has instilled in me the belief that disability does not necessarily mean inability. Wherein we should never place limitations on what we are all capable of accomplishing once our hearts and minds have been set on doing something. For all the parents who have children with disabilities or about to have a child who will have a disability remember No one could predict how the baby was going to turn out 100%. No matter what the limitations may be on the body, your child’s spirit can't be denied.
Please take a moment to watch Jayden undeniable spirit!