Author's Note: This piece is not written in the voice of Garbageman's Daughter but instead the real voice of a worried mother, and the content here is not exaggerated as in most of my other entries.
My son has 20 seizures a day. He has bruises all over his face from all of the falls, and he is losing the use of the left side of his body. He must wear a helmet when we leave the house. This once soccer star and pre-school switch hitter with extraordinary speed and overall athletic ability has been reduced to being a sit-all-day, movie watching, video game playing kid.
We thought he would be diagnosed with Epilepsy, take some medicine for a few years and eventually out grow the seizures. This is not the case. My five-year-old has Rasmussen’s Syndrome, which is a rare progressive neurologic disorder that causes deterioration of one side of the brain, single-side paralysis and eventual mental retardation.
Fortunately, there is a now radical procedure called a hemispherectomy that stops the seizures forever, prevents mental retardation and eliminates most of the paralysis. This surgery involves removing half of the brain. In my son’s case, the right side of his brain will be turned off but not actually detached and taken out of the body as previously done with early occurrences of the surgery.
Wow, my son is going to have half of a brain. I think I am still in shock. Four weeks ago, he was a perfectly happy five-year-old, and then he just started falling down for no reason. This syndrome has aggressively and swiftly attacked his body without giving him much of an opportunity to fight back—no recourse but to have half of his brain turned off.
The good news is the brain is phenomenally adaptable and will rewire itself. Most of the functions once performed by the right brain will be taken over by the left side. He will not lose any cognitive ability. He’ll be able walk and even run (with a slight limp) and use his left hand a little (although fine motor skills in that hand will elude him). But, lots of people live limited use in one hand and this is a small price to pay to not lose our child to mental retardation or something worse.
Our third child will have more challenges in his life than his three siblings, and it seems so unfair. But since he is so young, he will have no memory of ever climbing play equipment with both hands or swinging a baseball from both sides. Fortunately, time will make him forget the anger and pain he feels when we tell him that he cannot play soccer or baseball. These losses will just make him find new ways to express himself. He will not lose his creativity and his sharp-wit. And some day, this grandson of a garbageman could even have his own blog to write highly inappropriate jokes about having half of a brain. He will be okay…someday.
