June 18, 2013

  • Our Journey with Epilepsy


    I just opened my box at the post office and inside; there was a flyer from the Epilepsy Foundation. In large bold red letters, it said CURE epilepsy.  I have seen those words on that flyer many times before, but this time it made me angry.  My son, Brandon just turned forty years old and together we have worked extremely hard to help him achieve his dream of independence. 

    He has had epilepsy since he was nine years old.  He has grand mal seizures and generalized epilepsy and he has taken over 30 different drugs over the years to try to stop his seizures and unfortunately none of them have worked.  According to our neurologist, he does not expect any medication to ever stop his seizures.  

    Seizures can rip your life apart.  Brandon is not alone as 30% of people who have autism also also have epilepsy.

    Just last week, I went over to Brandon’s apartment to take him out to dinner.  He sat across from me with a huge black eye and the whites of his eye were completely red.  He ate his dinner and said nothing about his eye until I mentioned it. He said he had another seizure and he can see just fine and the red and black eye will go away.  Yes, sometimes things look worse than they are, but really after being on this path for the past forty years, some things just get to you. 

    How was it that Brandon had a black eye after his last seizure as well? That in itself is just weird. Being that the eye area is extremely delicate and crucial for his vision, it began to get me down.  I am still unable to keep my son safe and that saddens me deeply. 

    After all these 16 years of Brandon being able to live independently, he still has these horrific seizures that would stop anybody dead in their tracks, but not my son. After he wakes up from a seizure, he is discharged and walks to a nearby restaurant and then walks home. He is determined to get better no matter what the doctors say or believe.  I truly have never met anyone quite like Brandon with his determination. 

    I struggled on this path when I first began on it and now after forty years, I find this path to be one of the richest paths in the world. Where else would you meet such extraordinary parents who are dedicated, devoted, and never give up.  Where else will you meet children like my son, Brandon? These children silently demand that those close to them grow and change and see life differently. Brandon keeps me on my toes. He has been and continues to be my finest teacher.