Monday, March 26, 2012

It's Purple Day! (National Epilepsy Awareness Day)

In the early fall of 2004, our youngest son crawled into bed with my wife and I in the middle of the night.  It wasn't an every night occurence, but it also wasn't a huge surprise to us. Shortly after he settled down, he began to make some strange noises.  Within 30 seconds we realized something was very wrong as he began to have a grand mal seizure.  You have to remember it was dark, we were only half awake and the 2 minute event felt like it went on for an hour.  Neither Barb or I had any context for what was happening.  When he stopped convulsing, we weren't sure what to do next.  His eyes closed, his body relaxed and after a few minutes everything seemed normal.  I'm not sure that either one of us slept after that.  He went to school and apart from being a bit tired, seemed fine.  By the time we got to the doctor that afternoon, there was no indication that anything had happened.  Our doctor assured us that a night seizure was not uncommon and that it was quite likely a once in a lifetime event.  We appreciated his insight and proceeded as though it was behind us.

After several more events, we decided that we needed to take further action and so we visited our doctor again and he ordered some tests.  The diagnosis was that our son had a form of childhood epilepsy.  The good news was that as long as his seizures were limited to the night that he would most likely outgrow when he came into adolescence. His condition wasn't serious enough that he required medication, it was more just a matter of being attentive of the length and severity of the seizures.  If they increased in their intensity or extended beyond several minutes, we were to call for medical assistance. We were fortunate that he shared a room with his older brother and that he was very good at letting us know if his younger brother was having a seizure.

It was scary and nerve wracking time for us.  There were times that he was aware that 'something' had happened.  There were other times when he just awoke after it was over and was tired and lethargic. Perhaps the most difficult time was when he had seizured in our bed during a night time visit at around 6 AM.  He slept for about 30 minutes after it was over.  When he awoke, we visited and chatted as everything seemed 'normal'.  He announced he had to go to the bathroom and jumped off our bed to use the ensuite.  When he wobbled and stumbled, Barb picked him up, got him to the bathroom and then brought him back to bed.  He was a bit embarassed that he had fallen but we visited and talked together for a few minutes longer.  He announced he was going back to his room and bounced out of our bed again.  I will never forget his look of fear and confusion as he looked back after wobbling and falling again.  I don't know that I've ever felt so powerless and helpless.

For almost 3 years to the day, we watched our son suffer grand mal seizures every couple of months. During that time, he played sports and remained a healthy and active boy.  There were times when we thought we had an idea what caused the seizures and then other times where we were completely taken by surprise. What we ultimately learned is that you can't really predict when a seizure is going to happen.

Today is National Epilepsy Awareness Day or 'Purple Day'.  I regret that I didn't realize that it was 'Purple Day' until it was too late to participate.  Our son had his last seizure Thanksgiving weekend 2007.  He is a healthy, athletic young man who is an A student. He is a student athlete and plays AAA baseball. We are very grateful for God's kindness to him and to us in this. We fully recognize that there are many parents, children and individuals who have not been as fortunate as we have been with this condition.  Our experience has taught us that people with epilepsy are not fragile or disabled in some way.  They are normal, bright, intelligent people who live with a condition that requires great courage and grace.  Some suffer in ways that are largely unseen.  Others experience seizures in very public ways. The temptation is to either stare or run.  Try to avoid both.  The person experiencing difficulty needs your help. Click here for more information on how to help someone experiencing a seizure.

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