My Son Is Not His Disability

  • While conducting a business transaction for Brian’s special needs trust the other day, the bank teller assisting me commented how tragic it is that Brian was born disabled-whoa! I was not expecting this at all!  How often have you heard someone say that?!

I have learned over time, by my own mistakes, and with experience,  to consider and process what is said when someone makes a statement about Brian’s special needs, THEN respond.  I was prepared to address the comment, but wanted to do so in a way that was informative, without being defensive. Sometimes in the past I have reacted, instead of being reflective first, depending on the day, a bad night’s sleep, or whatever the Challenge Dujour was. 

I first showed the teller a picture of my beautiful boy, speaking of his many virtues, despite the hardships and challenges that his disabilities bring. I could see by this woman’s reaction that she honestly had no idea that a marriage of disability and happiness was even remotely possible. She was teary-eyed when she confessed that she didn’t realize that blessings could coexist with disabilities. It was a powerful moment for both of us, as I experienced my own reminder of how special our kids truly are. They have a lot to teach the world about who they are, what they CAN do,  and what they give so freely:  unconditional love, total trust, and a child-like wonder that warms the heart and inspires the soul. It took a long time for me to really believe these things about Brian, as once upon a time, I was more focused on his limitations, instead of the wonderful person that he is. 

When Brian was first born, I, like the bank teller, also felt that his disability of Down syndrome was a tragedy. I was overwhelmed and felt totally unprepared, despite being a special educator. I also felt out of control, out of my league, and certainly out of my comfort zone. I had really hit a low point when Brian had open heart surgery at 3 months old. The surgery was the longest 4 hours of our lives and I remember subconsciously not wanting to hand Brian over to the surgical nurse prior to bringing him into the  OR. My husband had to gently encourage me to release our baby, which began the surreal 9 day journey in the hospital. The surgery  itself was a success, but those early years were just a whirlwind of  one medical or developmental challenge after another…

 It’s hard to believe today that Brian was once so vulnerable and helpless, this strong young man who now eats nonstop!  His remarkable recovery  from the heart surgery and eventual discharge from the hospital  was the first of many examples of Brian’s strength and resilience that he has and continues to demonstrate each day. 

When Brian was diagnosed with autism at 30 months old,  we were absolutely devastated by this additional diagnosis, but at least we finally had some answers to the questions that had plagued us for  several months regarding Brian’s unique development. It has been through both joyful times  and some of these  most difficult trials over the past 14 years that my heart and perspective have been gradually transformed for the better. 

Along the way, we have met wonderful families and professionals who share their experience, strength, and hope with us. These gifts have sustained us through hard times and have given us great opportunities to socialize and have fun through a plethora of activities. Brian lives a good life that has meaning for him and gives him joy! These are things I like to share with those who are curious to know who Brian is and  what our dynamic as a family is like. I appreciate the opportunity “to spread the word’ that our  son is a person first, with preferences, emotions, and abilities, just like everyone else!

While I may be teaching others a lesson or two about our son whenever the opportunity presents itself, Brian teaches me daily through his hugs, wants,  joy, fear, transition troubles, sensory issues, etc.  the most important life lesson: how to love and to be loved! My son is not the sum of his disabilities; he is a gift from God and my greatest teacher. Brian’s joy is contagious and his hugs are as huge as his heart. He lives and loves authentically, he is my hero and my heart…❤️❤️❤️ That’s what I want the world to know!! 

Until next time, thanks for reading! 😊 . 

 

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