I'll never forget the second seizure Michael had. It was just about 24 hrs after the first one had happened at the department store. He was sitting at his little tykes table ,giggling and playing Lego's with his sister Jennifer. I was cooking in the kitchen cutting up vegetables, I just happened to look up and at that moment, he was having a seizure,just about 3 seconds long. An expression came over his face I had never seen him have before ,his smiling animated face became solemn and withdraw. Within those few seconds he had changed. His world was no longer safe,not even his father and mother could protect him from the avalanche of seizures that were about to bury him . His world became a world I can only observe. If you can image walking down the street or standing up talking to someone and wham out of nowhere you are abducted by a seizure .It grabs hold of you, shakes you and doesn't let go until its wrung out all your energy. Ive heard it described as "stolen moments" but it affects Michael more than for just a moment. The post seizure period can last 1-2 hrs but now after 17 years of seizures just a few seizures can wipe him out for days where all he can do is sleep. The only problem with sleeping for days (besides missing out on your life )is sleep is when his seizure threshold is low and he winds up having more seizures which means he needs more rest..it is a viscous cycle which plays itself out for days. His adrenal glands are shot and so are mine.............
We have endured emergency room visits, IVs that Michael would yank out of his arm and seizures that knocked out his front teeth after being throw down to the ground.. At one of our visits to the ER they overdosed him on Valium. He started going into respiratory failure and they came to us saying "your child is going to die if we dont intubate him , we need your consent , and you have 10 seconds to make that decision". The next five days were spent in the pediatric intensive care unit with Michael having a plastic tube down his throat. He was about 8 years old when that happened. Since then I never let a nurse,paramedic or doctor start an IV without knowing exactly what they are doing and why. The list goes on from there ,there was the ketogenic diet, the Vagus nerve stimulator implant surgery, the surgery to replace the implant battery which, we will be facing again soon. The last time we replaced the battery, the incision became infected because Michael kept scratching at it. It took months to heal. I've not even mentioned the grueling process of starting Michael on the anti-seizure drugs , all these many medications that we had to gradually increase the dosage of to reach therapeutic blood levels , while watching the horrible side effects and then gradually taking him off of because they did not work. Along with this there were of course the endless blood tests to check the blood levels for whatever medication he was on. Not to mention the difficulty and sometimes insanity of trying to get a young mentally disabled child to take his medicine because if he doesn't things could even get worse. I've already written about the painful experience with the first neurologist , well not shortly after that I had a pediatrician tell me that Michael was probably going to die at an early age. He said this very matter of factley....I went to see this doctor because Michael had a sinus infection. Can you believe that? He knew nothing about neurology or genetics!!!!!! Oh yes! Those were the early days. Our initiation into, if you will, the world of suffering . This is the first time I have ever written about our history. I've journaled some here and there but this time I wanted to tell Michael's story, my attempt to get it all out and speak to the collective of mothers out there who share the common experience of raising a child with rare disabilities.