After receiving Nate’s diagnosis from the geneticist at The Children’s Hospital of Philadelphia, I was given a packet of information from The National Organization of Rare Disorders (NORD). That paperwork was great, however it provided us with minimal help in understanding our child’s life and his future.
Then when Nate began attending school, I received a little more information from Nate’s teachers and therapist, who had previously taught students with the same diagnosis.
However, as the years progressed and I sought new ways to help my son, I noticed the overwhelming amount of new information. There were journal articles from doctors that researched CHARGE Syndrome and new studies that found ways to help deaf and blind children, like Nate. There was the internet with its fast and easy way to locate information, as well as its social media groups for parents with children with special needs.
As I enjoyed learning more about Nate’s diagnosis and interacting with parents who had children like mine, I couldn’t help, but wonder “What if” I had that same knowledge while raising my child. “What if” Nate had access to those new medical discoveries and educational resources. What would Nate’s life be like? Would it be better? Would it be different? What if I could do things differently?
And throughout the years those “what if” thoughts continued to badger my mind. It was so overpowering, causing me to become sad, as my mind fantasized of life being totally different for my son.
I remembered sharing these feelings with a friend. “What if I had known the things that I know now? What if I sent Nate to a better school? What if? Perhaps life would be better for Nate. Maybe he would be more independent and not have behavior problems.”
At that moment my friend blessed me with her words. She said, “You can’t allow, “what ifs” to run your life. You need to be content and proud of the work you provided for your son with the resources that were available to you during the time you raised him.”
Wow!!! And that was it for me. Instead of thinking about what life would have been like for Nate, if I had “this or that,” I needed to be happy with what I had given him. And I had given Nate a lot, from early intervention services that included a physical therapist, occupational therapist, vision therapist, and more. Through the years, I provided him with the best care, both medically and educationally. Nate didn’t lack anything.
And with that said, my lesson became clear. I needed to stop the “What ifs” and be joyful and content that Nate was given the best, especially my love.