Gary was tentatively diagnosed with epilepsy, in the form of "partial complex" seizures. He had his first seizure the day after Thanksgiving, 2000. We didn't know it was a seizure then -- at the emergency room, doctors thought he might have fallen and gotten a concussion somehow. On Christmas day, he had his second seizure, and his first tentative diagnosis. His third seizure was at our house January 6th, 2001, which is when we first put him on anti-seizure medications. These appeared to prevent seizures, but made him logey, and made it hard for him to talk and walk. His fourth seizure happened February 18th, 2001, a Sunday evening, when we were in the process of reducing his medication and considering a move to a different medication. The final seizure, the one that killed him, happened while Gary was with a group of kids at the Champlain School Early Music Education program.
During this time, we were frantically trying to educate ourselves on seizures, epilepsy, and heart conditions.
His seizures were not "grand mal" seizures with lots of thrashing about. He would cry out, stiffen and grimace briefly, and then go limp for several hours. The core of the seizure seemed to last only about 10 seconds. We saw this actual part only once.
Here is a letter that Pam wrote about 3 weeks after Gary's death that tells about Gary's death more eloquently:
Well, everyone… Another week has gone by and Gary is still gone, but we are still alive.
I have felt myself moving through some of the grief stages, at least as I have read them in the parent bereavement books. Denial was definitely a big one for a while at first and I spent a few days saying over and over again "Gary is dead. Gary is dead" like a mantra. That has stopped and I realize it has become more real for me. And with it the shock has left. Being able to see pictures of Gary in the funeral home, which my dad took, has helped me focus on the reality instead of getting lost in a surreal world of disbelief which would be easy to go to. Looking at these pictures helps me work through the fact that he is gone. Looking at live pictures is great too (Once I get it together, I plan to have a picture in every spot in the house. Meanwhile, we still enjoy the big memory boards that were made for display at the memorial service). So while these live pictures are great and welcome, coming to terms with the reality of his death has been some of the big phases of this past week.
We met with our pediatric neurologist and pediatrician yesterday to share information on Gary's death. This was our first meeting with them (besides at the memorial service) since Gary died. We shared with our doctors what happened in the seizure and the neurologist gave his opinion on what happened to Gary, based on the information he has so far (he has yet to review complete autopsy information and a videotape of a prior seizure).
The neurologist believes Gary may have experienced SUDEP, Sudden Death in Epilepsy. He shared with us again the fact that sudden death from a seizure is very rare, with something like 99.9+% of seizures NOT resulting in death. Most people that have a seizure disorder experience seizures that do not even require any medical intervention. One way I have been looking at this tragedy is that we lost the lottery. The risk of death is present in almost any medical condition or procedure, however, most of us realize that it probably won't happen to us. We thought the same way, but we lost that lottery.
I came away from our meeting with doctors realizing that Gary had a serious and developing (worsening) seizure disorder. Gary's seizures, as doctors describe them, were temporary electrical mixups in a specific area of the brain (the same part every time). That part of the brain affected specific parts of his body during the seizure. The neurologist's current supposition is that Gary's heart (which was otherwise healthy) was one of those affected areas. In other words, during a seizure, Gary's brain could stop telling his heart to beat correctly. The doctor described Gary as carrying this "liability" with him, and feels it is likely that this tragedy would have happened at some point in Gary's life.
Anyway… This has all made me feel more comfortable that this was a serious medical complication of Gary's which I find easier to accept. Given that we are in a new group (parents with child loss), I feel we are in one of the better situations of that group. I can say with confidence that Gary experienced no pain or awareness of the seizure and any of the aftermath interventions to save him. Neither he nor us suffered through any long term illness (besides our anxiety from the recent seizures). And he had a beautiful life up to the very second he collapsed.
We had had a beautiful morning that day. We walked down to the local elementary school with Daniel and Gary in the double stroller. I remember him leaning forward most of the way to check everything out that was around him. We enjoyed his music class early on, with him and I enjoying lots of cuddles and hugs during the songs. Between classes we played on the playground, swung on the swings with Daniel, and then the three of us wandered through a little wooded path next to the elementary school examining fallen trees, watching birds, gathering dried cattails. Then Gary had a snack in the stroller, kicking his feet to the music, while he watched Daniel's music class. Half way through he was restless to get out. He wandered around the back of the class for awhile finding a little ledge on a table to run his little truck along. Then he wandered from parent to parent showing off his truck to each. When class ended, while parents were gathering winter coats, he was engaged in the weekly ritual of running around the room with the other children. He was at the head of a line of several children who had discovered in previous weeks that they enjoyed running "after" Gary. He was king of the line, toddling along, a big smile on his face and loving life, when his seizure struck.
This may all be more information than you wanted to know, or maybe still not enough. Unfortunately, it is all I have. I of course grieve for Gary daily. But I am more aware that he is really gone. We are now a family of three once again.
The silver lining I have found so far, is that Daniel and I are rediscovering each other in a way that we have been unable to in the two years Gary was here. Daniel and I still have many challenging moments together (I think he and I are too alike, in many ways) but I have time to appreciate Daniel in a way that I have been unable to for a very long time. As a threesome, we can enjoy activities that were not easily possible when also caring for a 2 year old. We all went downhill skiing for the first time together after our big blizzard and Daniel got his first real time on downhill skis. Today we went for a small cross-country ski together as a family. Eric and I have had challenges to our marriage over the past number of years, but in the hospital pledged to work so that this tragedy did not destroy our marriage. So far we are working at communicating and recognizing each of our needs through these challenging days. Hopefully that will continue through the long process of healing.
Daniel and I are looking forward to our trip out to Utah to ski with my family and Daniel's cousins. He'll get to really learn to downhill. Eric will stay here, and is looking forward to some time alone to work through things. He has had very little time to himself since the tragedy. And the local community continues to be very supportive with meals and understanding. I am being sparing in my public appearances, not wanting to take on too many people at a time. The gym and taking Daniel to Stepping Stones pre-school have been my main voyages.
I guess this is all I have to share for now. Thanks for listening. Thank you also for your emails and phone calls. Please accept my apologies for not answering or responding right away. Sometimes I am in a personal space, or Daniel and I are spending time together. But the messages are helpful to get. It is nice to know you are all out there, thinking of us.
Take care. I'll be in touch after our trip.
This site was last updated 01/06/03