A Mind is a Terrible Thing to Waste

I have often written about the many trials and tribulations of having a chronically ill child but by far the biggest challenge in my mind is dealing with other people’s impressions of my child. Many people, even adults, have a hard time differentiating a physical challenge from a mental challenge. They are not the same.


My son was born with an imperfect body yet he was born with a gloriously beautiful mind. He cannot run as fast as the other children but in many respects he can (and does) run circles around them. He has a far more mature thought process than the average third grader. He asks incredible questions because he craves knowledge and the ability to understand even complex issues. Although we are often left exacerbated by the sheer number of his questions we ultimately recognize them to be incredibly insightful.


He also has unbelievable problem solving skills, most likely because he has had a lot of problems to solve these last eight years. Although many of his problem solving skills are based on his complete and utter stubbornness it is this stubbornness that has helped him survive when others were certain he would not.


He has without a doubt the most sophisticated sense of humor I have ever seen in a child…and in many cases adults. He has the uncanny ability to find humor where there may not be any, at least not in someone else’s mind. He can laugh at himself, tease his sister, and deliver a play on words all with equal ease and comic timing.


I often think that my son was born an old man. Perhaps it seems that way because he was robbed of a childhood by 30 plus surgeries, a complex genetic syndrome that has no name, and many physical challenges. Physical challenges not mental challenges.


None of this is written to minimize the struggles of others who do have mental challenges, they have their own set of unique and beautiful assets. But rather to express my frustrations when others interact with my son as if he is limited in any other way then physically. I am tired of him brining home class work that is so far beneath him he doesn’t want to do it and thus it gets sent home to be completed. I am tired of a teacher who asks me why I push my son to succeed scholastically. She wants to know what I will do when he reaches his limits and is no longer able to keep up with his peers. I am tired of other parents telling me about their nephew, their cousin, or their friend’s child who was actually able to finish school and get a small manual labor job and be successful on some level. Are these people kidding me? Have they never talked to my son? Have they never really looked at his abilities without biased eyes? I am tired of being the one that has to teach my child because the school system will not and does not. I am his parent, his caregiver, his nurse, and his doctor do I really need to add teacher to the list?


This struggle will continue, perhaps for the entirety of my son’s lifetime and so I worry about what will become of him when I am no longer here to run interference for him. Although something tells me he is capable of running circles around me as well and will run his own interference with intelligence, humor and grace.