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Posted on March 06 2014
Grayson started having seizures at two days of age and after seeing many doctors, having numerous tests and procedures performed, it took 14 years to finally diagnosis her with something so rare it is still letters and numbers: STXBP1. She is severely handicapped in all areas of life. They compare her to a six month old baby. While babies will continue to grow and achieve “typical” milestones, Grayson can take you on a wonderful journey only to be experienced by having a child with special needs. This is not always an easy trip to take but God promised never to leave us and we feel blessed to know that He trusted us to take care of one of His little angels.
Being Grayson’s mama is an immense feeling of happiness mixed with a little bit of heartache EVERY SINGLE DAY. I am so happy to hear her make sounds and love to look into her amazing blue eyes. I wonder what she is thinking and it hurts that I will never know. But those moments when it’s just the two of us I watch and listen to her closely so I don’t miss out on this precious gift that was so graciously given to me. Grayson has so much to tell and to show others only you have to slow down, sometimes become completely still and quiet, to hear and feel what God is trying to tell us through her. I have to admit this is a big task for me which is another reason God chose me to be her mama. He needed to get my attention. Just as I thought my world came crashing down around me and my life would be forever changed, little did I know that forever changed meant forever blessed. Because of this roller coaster I call “my life” I have been able to meet many wonderful people in the world of special needs. We have an extraordinary school named The Washington Center. Even though our children may have different diagnoses the common thread remains the same. We live in a different world than those around us and it is hard for people to understand what we go through. For us to be able to leave our children in the care of such loving and patient teachers and staff is a great comfort which is something we rarely get to enjoy because of the challenges that we face everyday. They go out of their way to make sure our children succeed in their own unique ways. We are thankful and blessed.
Jane J. Hart