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My son, my only child, Ethan will turn fourteen in just a few weeks. As a parent the only frame of reference we have is memories from our own youth.  At fourteen I had my first boyfriend. Ethan claims to not want a girlfriend, but I know he does. Damn tuberous sclerosis only makes life more difficult for him. Along with the teenage acne, he has angiofibromas that most girls will never see past.  

By the age of fourteen, I’d met Debbie.  A best friend to this day. Friends that Ethan has had his entire life have begun to make bad choices. I’m glad that Ethan will disconnect from them instead of wanting to follow along. But he needs a friend.  

Seizures got out of control. At this age it is difficult to always drag along a spare change of clothes. Never knowing when one will happen or how severe it will be has our family living on egg shells. Instead of hibernating, we continue with life, for our son. If he sees that we worry about these things then he will only feel worse.  

For him, I keep a brave face.  For him, I act like the chaos is normal. For him, I do so many things that I never knew possible. Friends, Family, and others comment, “You are all handling it so well.” to that I wish I could respond, “How do you think we should handle this SHIT? I’m sorry if I dont’ fall to pieces like you want.”  For my son, we don’t fall to pieces, even though inside I desperately pray for a way that I could suffer through it all for him.

Having a child with a disease is our life. We have chosen not to let the disease rule our lives. There are more people like my family than everyone thinks because they too choose to make chaos their “normal“.  

I don’t write this requesting pity. I write about this to open peoples eyes. Normal is defined by individuals and society. My life is normal. I am not extraordinary, I’m just me. Teaching this to my son is my main focus. I always tell him that he is perfect just the way he is. Unfortunately others may not see this at this point in his life, but I assure him that someday soon, others will see him and his normalness.


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