After Nate was born and we received his diagnosis, caring for him became my main concern. All I could think about was Nate’s health and making sure that he received the medical care he needed.
For the first weeks and months of my child’s life we visited many hospitals and doctors. Nate also had developmental testing, which led to him having therapy a few days a week. It was an overwhelming time, to say the least. Our busy schedule made thinking about anything else outside of Nate’s doctors and therapist, nearly impossible.
During a few of Nate’s appointments, medical staff and therapist would ask us to tell them about our child. I would immediately share Nate’s diagnosis to those that didn’t know about CHARGE Syndrome. After giving my brief summary, I was then asked to tell them other things about my son. Who was Nate? What were his likes and dislikes? As I thought about it, I felt stumped, as I looked for answers. That was when it hit me. Did I know anything about my son, outside of his diagnosis?
Did I? Did I know who Nate was? What he liked? What were his dislikes? What were his strengths and weaknesses? What made him happy? What activities did he enjoy? I thought I knew this about my child, but there I was questioning if I did.
Up until that time, I worked tirelessly to get Nate the help he needed. I must admit that I paid little attention to getting to know who my child was outside of his diagnosis. Yet, once I started to answer that question, I began being intentional about knowing who he was as a person.
I immediately discovered that Nate had a fun personality. I remember the first time watching my son laugh. He was about 6 months of age and he was laying on the bed. His father was on one side and I was on the other. Nate turned his head to look at his father, then back at me. Suddenly, a little chuckle came from his body. He did this a few times, laughing at the sight of his parents. His giggle was so loud, that it made me do the same, until tears were dropping from my eyes.
When Nate was about 2 years old, we took him to an amusement park, where we discovered his love of water. He splashed and smiled, as he dipped his face in the water, full of happiness. This was another moment to learn what Nate enjoyed.
These times and others, were great. They allowed me to learn who my son was outside of his diagnosis. I was able to answer those questions of who was Nate, what were his likes and dislikes, what were his strengths and weaknesses, and what made him happy.
This was when I realized that my son is not only his diagnosis of CHARGE Syndrome. He is more than his hearing loss and his blindness. Nate is more than his intellectual disabilities. He has needs and wants. Nate has a personality and the only way others will know this is if they are intentional about getting to know him.