Do you Embrace Life, or Fear it?

People all around the world, are judged, criticized, and compared by others on a daily basis. People are always feeling this constant pressure, to be perfect. Parents and children, with any type of chronic disease, end up being incredibly self conscious about themselves. TSC more often then not, causes outward manifestations on the surface of the skin; i.e. Angiofibromas (facial lesions), and Hypopigmented Macules (white leaf shaped patches on the limbs). These outward "side effects" cause us to stand out more. Consequently, human nature, causes us to be a bit more paranoid than our peers.

When I was eighteen, I asked my father, if at any stage he was ashamed of my condition. His response surprised me. "Yes," he said in deep contemplation, "I was embarrassed for you, watching people stare at you. People are stupid, it really irritates me, because the are ignorant, they are always suggesting things; "have you seen this dermatologist?" or "here let us pray for you". As your father I feel as though I have to fix your face. But even if I was a millionaire I would not be able to fix your face." As a parent you want to protect your child, or children, you want to help them, or "fix" them. This is understandable. 

I had fallen in love, with the Montessori method, because of her focus on independence. Allow me to explain. As a parent, you feel the need to protect your child, this we have established. However, (based on observation) I have come to realize, there is a thin line between protecting and coddling children. Unfortunately, coddled children posses the following characteristics; firstly, laziness; "Oh, I can't learn to do that, because I have TSC." Secondly, Fear; "Oh no! am I allowed to bake? What if I have a seizure and burn myself? Am I allowed to swim? What if I have a seizure and drown?" And thirdly, manipulation; "Stacy's mom, my blood sugar has dropped, if you don't give us desert, I'm going to have a seizure." Please understand what I am trying to say. Children do not have to have a chronic disease the develop these traits. However, it is easy for children with a chronic disease such as TSC to develop a victim mentality. 

Once this happens, you end up with another problem; low confidence. What people have called "low confidence" is actually just fear... allowing fear to control you, which brings us back to independence. I'm not saying, do not keep your children safe, I'm saying allow them to experience life. even simple things make a difference. "Here Sweetie, you carry your school bag today." "Wow! Josh, you climbed the rope ladder all by yourself!" "Here, it is your turn to flip the pancake Stacy." Why? Why do this? Well, if their is one thing I know it is this; blaming people is easy, blaming a disease is easier. It becomes an excuse to hide, and the more you hide, the more difficult is to smile. I'm not talking about a mask, I'm talking about sincerity, it become difficult to be sincere. The best thing my parents ever did, was teach me independence, never hide, stay honest, stay in communication, and stay kind. You get two types of parent - One who embraces life, and one who fears it...

Which one are you?