Thursday, October 17, 2013

Dewey's Story

While I was showering tonight, the song "If I Die Young" by The Band Perry came up on my playlist. And, as always, my mind went to an adorable little boy who left life far too soon- my little brother, Dewey. Since I talk about him rather often, as he taught more than I can ever express in the 10 years we had him for, I figured I'd share a bit of his story for those following this blog.

Dew was born in June, 1989. He was a healthy baby, fat as can be. Mom always jokes about how his fat rolls helped him sit up long before he could do it by muscle tone alone. ;) He was 2 years younger than me but a  fast grower and soon he was close enough to me in height to drive his big sister bonkers.

Everything changed, though, the day of his 6 month immunizations. His DPT shot was part of a bad batch and it ended up leaving thousands of children brain damaged. (I've seen estimates ranging from 1,000 to 2,000.) Everything was fine in the doctors office but less than 30 minutes later, on the drive home, Dew suffered his first Grand Mal Seizure. Over the next 10 years of his life, Dew would suffer thousands of seizures, often having 3 or more per day, despite seizure medications.

At first, the doctors swore it was a "normal" case of epilepsy and Dew would outgrow it. It slowly became obvious that both the initial vaccine and the ensuing massive, and at times uncontrolled, seizing had left brain damage in their wake. Despite the fact that no matter what antiepileptic and no matter how much of it they threw at him, the seizures continued.

I'd like to take a timeout in this already lengthy post to say something very important: I support vaccinating children. Yep, I have documented proof a vaccine killed my brother and if I am ever blessed enough to adopt children of my own, they will be vaccinated, on schedule. I view vaccines like this: If my baby brother had to die so that millions of children could live, then I can deal with that. It sucks, but I can deal with it. Vaccines save lives. Millions of them.

My parents tried everything to slow the progression of Dew's seizures and the brain damage that accompanied the lengthy and severe ones. The ketogenic diet, medications, even drug trials. When Dew was about 4 or 5, the reason nothing worked was finally discovered- he had Cystic Fibrosis. CF is a genetic illness that causes lung difficulties which are fatal. When Dew was diagnosed, the average life expectancy of a kid with CF was about 20. (Research and lung transplants have since improved this.) CFer's are also more prone to all types of infection, especially respiratory ones. And, as in Dew's case, CF often causes malabsorption in the GI tract. The medications Dew was taking to stop the seizures were coming out the other end completely undigested. Once we added enzyme capsules, the meds started working, but finding a combination that could control seizures like this was a difficult and uphill battle.

Over the years, the seizures damaged and/or killed off the majority of Dew's brain. He could no longer swallow correctly and had a feeding tube put in, used AFO leg braces to walk, needed a wheelchair when out and about, and he lost the ability to talk.

None of this ever seemed to phase Dew, though. He smiled all day, every day. He had a hug for everyone he knew and most people he didn't know. He never cared if people stared. Nurses could stick him full of needles and at the end he'd smile at them and hug everyone. He had the most adorable grin and knew how to use it to get himself out of trouble. And boy, could he get into trouble...! To this day, 14 years after his passing, his antics are legendary. His particular favorite thing was to steal the kitchen utensils, especially the tongs, then he'd "sneak" them off to the living room where he'd proceed to hide them under the couch. He'd get his head stuck under that couch about twice a day and he'd just lay there, thumping his feet on the floor, and wait for someone to come find him. My older brother or I would get sent in to "rescue" Dew and once we'd pull him out, he'd just laugh or try to get us to chase him around and tickle him. He loved to be tickled. The little goofball would even tickle himself, laughing up a storm the entire time, which never failed to make everyone else in the vicinity laugh their butts off.

I'll never forget the day Dew died. He'd actually been really health recently and hadn't been hospitalized in a few months. He had a massive seizure and was taken by ambulance. This was pretty normal, so I was sent to spend the night with a friend. Mom showed up at the door, though, at dinner time. I assumed Dew was doing well and had been released, so I argued with Mom, wanting to stay at my friends. Mom drug me outside and I'll never forget standing in my friends yard, looking up at all the cars in our driveway and knowing that Something Was Wrong. In the end, Dew had seized for hours without stopping, and eventually his heart and lungs gave out. There was nothing they could do. Our little boy, our Curious George, our precious Dewey, was never coming home.

He taught me more than I could ever imagine. I didn't develop health issues until my late teens and the lessons Dew taught me have carried me through many hard times. He taught me that everyone is worth a smile. That crying ought to be reserved for the big things. To take time to be silly. To love and appreciate your nurses and they will return the feeling. He taught me that I can deal with anything that comes my way. I may not always manage to do so in a proper Dew Worthy Style, but I try my best.