In 1994, when Nate was born, there was a feeling that would not leave me. It was the need to know how my child was born with a rare congenital defect, CHARGE Association, now called CHARGE Syndrome.
I wanted to know….
How this happened and Why it happened?
I remember at our family meeting with the medical team, where Nate’s diagnosis was revealed to us. His dad asked the same question many parents ask…
“How did this happen?”
I recall the geneticist, explaining Nate’s chromosomal test being normal. Then she said, “This was something that just happens. We don’t know.” Yet, that wasn’t enough for me. I needed to know more.
For a while I struggled inwardly, with the need to know. Yet, when I began looking for answers in 1994, it was difficult. I had a little packet of information given to me by the Genetic Counselor. I had no access to medical books and the internet was still in its infancy stage with no information about Nate’s diagnosis to be found. Locating my “How and Why” was not easy.
And as the years went by and that need to know, continued to bother me, I began searching. I gained access to medical books and online medical journals. I read articles by leading experts in the genetics and rare disorder field. As I read, I could see that since 1994, the research on CHARGE Syndrome, had made vast improvements, where they had found my “how and why.”
That was what I was waiting for. Yet, as I continued to read, there was a feeling in me that didn’t care anymore. It didn’t matter. I had come to the point where I saw Nate’s life and my life differently.
Nate was growing up, and entering his teenage years. Knowing “how and why” wouldn’t change anything for me. It wouldn’t make things different. My son’s diagnosis wasn’t going to be reversed. Things would be the same.
That was when I stopped. I ended my search for my “how and why.”
And I am at peace with not knowing.