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.

the divine mother

Having read the Greek myth of Demeter and Persephone, I began to look deeper into its many meanings and found some personal similarities with Demeter I never saw before. She was a Greek Goddess but also a mother who experienced the pain of having a child who she knew was suffering and could do nothing about it, although she tried. She was a mother whose child was taken from her against her will. I found this story to be very pertinent to my own life with my son Michael. As the story goes, Persephone was picking flowers with not a care in the world when the earth opened up and Hades took her down into the underworld. When Demeter heard her daughter crying out she felt a great pain in her heart.. She was overcome with grief.. Demeter stood in the reality of this horrific pain and went in search of her daughter. I find it fascinating that in the story she doesn't receive any solace from her connection to the spiritual realm and her gods. She abstains from divine food and the putting on of her immortal clothing and takes off to rescue her daughter. What we usually do when in a crisis is cry out to God, but she doesn't.I know in my own story with Michael I found it hard to justify receiving anything good from God. My thinking being, that if he was to console me and not meet Michael's need, which was far greater, what kind of God is he? So yes, I felt like Demeter. This part of her story is central to the mother that I am. Like Persephone playing among the flowers and being swallowed up by the earth, Michael also was playing in the department store, hiding under the clothing racks and being mischievous when out of nowhere he was literally taken down to the underground, if you will, by a seizure. Hearing the cries of her daughter Demeter was struck with pain that was devastating and like the ancient mother I too was struck down with an unbearable pain that has left my heart broken forever. Like Demeter I was inconsolable.... and to be honest .....to this day there is nothing that takes away the pain. Everyday and every night I worry about my son. I know all mothers that have children with disabilities will worry about them throughout their lives-for when we are gone who will care for them? No one can care for them like we do. We believe in them, have hope for them and love them with a love so strong no one can duplicate. Among Michael's caregivers I am called The Mama Bear. I am fierce in my oversight of him. Now that Michael is a young adult I have learned to let go (a little)and trust me it isn't easy. It will probably never be easy to trust that he will be well taken care of. I will never feel that assurance. Unlike Demeter who gets her daughter back, I will never have Michael fully back. I will always grieve and feel the pain of this loss. The loss of knowing he will never experience being in love, marry or drive a car. These are thoughts that break my heart. When he was ten I still held onto the hope that Jesus would heal him but as the days turned into months and the months to years, my hopes were dashed and what remained was a sobering sadness. I joined the millions of others who suffer in silence . I will say this ,the one thing i am learning is that suffering has a mysterious side to it that can bring about a deeper connection to ones soul . Suffering in its very nature can purify us like a devouring fire that burns away at the unessential things in our lives and lays bare our heart and soul. Where we go from there is the ongoing journey, the ups and downs of believing and doubting . But if we never know suffering then it is our tendency to stay consumed with our own egos . So do i believe we all must suffer to know our soul? . No, of course not-but sorrow and suffering cause us to question in a way we usually don't. When we ask the age old question "why do the innocent suffer" and we don't get an answer back, we are left with facing the vast open plains of this very difficult mystery. So then maybe we should not be asking why the suffering, but asking how do we go on from here.
I just got a phone call from Michael's day program letting me know he had another seizure. I want to know of every seizure he has. I have some crazy idea that if i know i can carry part of his burden, then he wont suffer alone. After the phone call I caught myself still questioning after hundreds of seizures, why? but i stopped and resigned myself to the pain....and thats when i allow myself to grieve again, letting the pain in and then letting it out once more.