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Often known as GDWOLF90 on AOL, Glenn was a true Star Trek Trekkie, with The Next Generation being his favorite, followed closely by Voyager. He also was fascinated by and loved wolves. A complex individual, Glenn was far more than the sum of his parts. His uniqueness confounded his teachers, doctors, specialists, friends and family. Often it was difficult to see beyond the surface Glenn into the heart and soul of who he really was. As his mother, I was one of the lucky ones who could. I hope, in some way, through these pages to celebrate the life of this very special young man and in the process, perhaps, inform, educate and save others out there who may be somewhat like he was.
Glenn's Voyage from Earth
Because of the nature of Glenn's death, it's necessary for me to begin this chronicle backwards.
On Monday evening, May 10, Glenn sat next to me on my bed as I was getting ready to retire and he was just beginning his "day". Glenn loved to stay up all night and spent many hours on the Internet, downloading music files and chatting on AOL, or just watching old videos (Star Trek, of course). We were discussing getting old and dying and Glenn turned to me with a lopsided grin and said "Mom, I'm not going to die, I'm going to live forever!" I didn't find this comment particularly unusual as Glenn was very much into science as well as the metaphysical. I kissed him goodnight and went to bed.
Tuesday morning, I got up, got ready for work and found Glenn sitting at the computer. I handed him his seizure medication (he had had epilepsy since age six -- another story), kissed him goodbye and left for work. Around 1:00 pm he called me at work and asked if his teacher was coming that afternoon (he had just been placed on homebound instruction again -- ANOTHER story). I told him that no, his classes wouldn't start until the next day. He said "Oh, good, Mom, I'm so tired. I think I'm going to bed now." He told me he had downloaded some files to my computer and to please save them until he could get his computer back up and running and transfer them there. We discussed dinner plans and then hung up. I arrived home around 6:30, peeked in and saw that he was still sleeping and piddled around a bit, reading mail, etc. thinking we'd have a late supper since he hadn't been sleeping that long. At 8:00 p.m. I went in to give him his evening medication. He didn't stir when I said "Sweetheart, wake up, it's time for your meds." I reached down to touch him and realized instantly that he was gone. I won't describe the disbelief and hysteria that followed. Any parent who has lost a child has "been there and done that".
Sudden Unexplained Death in Epilepsy (SUDEP)
My very first thought was that Glenn must have had a seizure in his sleep. He had these often, particularly when he was exceptionally tired. The Police, of course, had to rule out suicide and asked many questions and looked for notes. I explained his medical history. Several days after his passing my thoughts turned to his former neurologist., a wonderful young man who had fought very hard to control Glenn's seizures when he was younger. This doctor left Atlanta in 1995. I "found" him on the Internet at the University where he now works and e-mailed him of Glenn's passing. He wrote me back a beautiful letter and in it described SUDEP and how it was a recently emerging entity. He said that now that many of his former were patients were reaching adulthood, he received several calls a year telling him of patients who died in their sleep.
SUDEP -- a name, something to hold on to, something to give me explanation. I hit the Web and searched. I didn't find much, particularly in the US, but I DID find a web page originating out of Canada and more information from the UK. I found a couple of WebPages devoted to other loved ones who died from this. I was stunned. I thought I had known everything there was to know about epilepsy and yet I had never heard of this "SUDEP". I learned that Glenn was in a "high risk" group for this syndrome. Would knowing have saved Glenn? Probably not. Were there precautions we could have taken to lessen his chances of dying from SUDEP? Probably. As a parent, do I wish that I had been TOLD of this? Absolutely. Doctors don't mind telling parents of SIDS, especially parents of children at risk for SIDS. SUDEP is very similar. Shouldn't parents (or patients) at least HAVE this knowledge? My personal belief is yes. From what I've read, SUDEP is still relatively rare, but then the statistics are very sketchy because this term is rarely used on a death certificate. I will continue to search for information, but if you'd like to know more I've listed a few links.. Also if you have experienced such a loss, I'd appreciate it if you would e-mail me and let me know.
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