Taking Benjamin out, we get a good number of looks and sweet comments. Most comments consist of “bless his heart,” “such an angel,” and “I’ll be praying for you.”. None of this bothers me. Maybe it’s because of my ten years working with kids of different abilities, and maybe it’s because I am so happy and proud of Benjamin that I could really care less. No one has every tried to be rude, just curious. Most times I smile, or make a silly comment once they are out of sight like “yes, he has a tube out of his neck…we are aware.” (Always with a smile, never upset or angry)
One misconception is that Benjamin is “sick.” I feel like I never respond appropriately when people mention the word “sick” when talking about Benjamin. He has been sick and in the hospital before, but on a normal day, Benjamin is not “sick.” People avoid “sick” people. “Sickness” many times is contagious. Benjamin is a happy, and growing little boy. Without the vent and wheelchair, Benjamin looks healthier than many kids his age.
Yesterday was the second time that I felt as though I should have been more prepared for an answer, but I was a little caught off guard. While waiting for an ultrasound, a nice (but a little nosey) gentleman asked, “what’s wrong with him?” I replied (smiling) that he had a rare genetic disorder with quite a list to follow. I sat there, angry at my answer, wishing and knowing I should have replied “nothing.” I know he didn’t mean to be rude, but there is “nothing” “wrong” with Benjamin. What if I would have said, “what’s wrong with you?” (He was the one sitting in pants and a hospital gown.) We all have our issues, some are just more visible than others. I know the gentleman didn’t mean any harm, but I think we should all work on changing the perception that there is something “wrong” with Benjamin and people with different abilities. He is perfect to God and he is perfect to us.