Today is the day that I decided to finally write something about my son and his life. Not for sympathy and most certainly not for attention. My hope in creating this blog is to enlighten people about epilepsy and possibly give some light of hope at the end of another persons dark tunnel. Even if it is too dark to see. All I ask is you forgive the grammar and any other mistake I might make in the deliverance of this story.
With our eyes we judge, With our hearts we yearn, protect and adore. With our senses we have the ability to walk through life with some common ground rules on how to live. If your challenged, you are beautiful and forever innocent. Never knowing the cruel side to life and the negativity that surrounds some almost on the daily grind. I'm wondering how many would love to live this way, even for a day.
There are too many stories to tell. From the best to the worst and everything in between. Instead I'll just start at the beginning and try to keep it as short as possible. After all the journey of eighteen years is slightly difficult to put on one page.
With ten toes and ten fingers and as healthy as he could be, Brendan was born on Nov, 6, 1991. From the very first breath he was ready to teach everyone how to live from the heart. Madly. I'm happy to report he's achieved that and still inspires many around him.
Now, the milestones that a new life automatically learns, without the instruction manual on how to walk, or crawl, came fast for my son. It seemed to me that he never could pause, he always strived for more. Never satisfied. Always on the go and wearing his mother out to the point of pure bliss and frustration.
Looking back over the past eighteen years, it's amazing to me, that he's come so far. With such a tenacity at a very young age and never giving up. Never.
At the age of four, Brendan would have his first seizure. The hot summer day was the first time in many of helping manage a store that I didn't have a moment to think about him, much less get a drink of ice cold water. Sales were booming. It was upon my arrival at our home. that I realized something was wrong. Everyone was outside. Needless to say, my neighbors were waiting for me to arrive. That's when I knew something was wrong. After the explanation of what had happened, I was driven to the local hospital to find my son lethargic and saying "momma". I had no time to be in shock, my mind started rattling off questions that my mouth couldn't keep up with. From what do I do if he has another seizure, to how did this happen, why did this happen, were asked without a bat of an eyelash. Immediately, I was assured that he would most likely never have another in his lifetime. That was not the case.
At the age of five, Brendan would be diagnosed with a multiple seizure disorder most commonly known as Lennox-Gastaut Syndrome. By definition, this is a multiple seizure disorder and is the most difficult to treat on-set epilepsy known to man. Here I thought my beautiful blue eyed and highly energetic boy had all of his life's possibilities wiped away. At the time it really felt as if that was the case. Signed and sealed.
There were days that Brendan would wake up for breakfast and be so cheerful and happy. Only a minute later, to find him at the kitchen table, falling off of the chair and go into a full blown seizure. One grand mal would wipe him of his energy for almost six hours. Now imagine fifteen seizures. All grand mal. Then throw in a seizure that's like fainting. Most commonly known as drop attacks. Add in myoclonic jerks. Which is basically twitching of his toes, tongue, eyebrows, fingers uncontrollably. If you thought all of the above were difficult to imagine.Try the possibility of 1-100 seizures a day. Any given day, Any given time, Any given place. Epilepsy has no predictability
A combination of all three seizure types, still left the neurologists locally wanting to treat him. Now never knowing anyone that went to a pediatric specialist or that had childhood epilepsy, I was left without the knowledge and at that time, I wouldn't question anything. When we were told that he needed a specialist, I was more than pissed off, to find out that he should have been seen by one from the get go. First do no harm is a vow that all medical professionals take and hanging onto a case where anyone wanted to be the savior in, wasn't looking out for his best interests.
Hospitalizations would last from days to weeks on end. In one year, Brendan was hospitalized eleven times. Still with no answers on how to help him, or how to cure this debilitating disease. At one point I was approached by a pediatric neurologist in the hallway. Admitting to me that my loving boy would most likely be in the hospital for the rest of his life, seizing. As the unexpected words released from her mouth, "we will do anything to make him comfortable while he's here" , They appeared to be slow motion like a movie scene. Brendan rose above all of that.
Between all of the medications, we found a really hard and very unpalatable diet for epilepsy called the Ketogenic Diet. Most practitioners would laugh about this when I discussed it. Thankfully, the pediatric neurologist would be very open to the idea and fully supported giving this a try. The idea behind is your body mimics a fasting state. Measured by key tones in the urine. During that fasting state, your body will burn fat calories at eighty percent of your body weight. Being that fat slows the brain waves, less seizures were a possibility. The diet was first implemented at the Mayo clinic in Minneapolis, and now is being used at John's Hopkins in Baltimore. I'm so very grateful that the Marshfield clinic had a dietitian that would teach us the technique and equations for meal preparations. For the duration of four years, both on and off of the diet, my not so little man tolerated this diet. No McDonald's, Next to no carbohydrates. If he can do this, I can pretty much convince you that it can be done. Anything can be done.
The heart inside of me truly smiles when I think of all of the people that have been saved from this diet. You can throw my son into that equation because since that diet, his epilepsy has been so much easier to manage. Others have remained seizure free for the rest of their lives. My not so little man, is the other statistic from the diet. Seizures were greatly reduced. Since then, he gets up every morning and goes to school and learns as best as he can. The ability of being able to live was granted again. For the both of us.
Now, my one and only child would teach me many of the biggest lessons for me in my life. When life gets you down, just keep on going. Roll it off your back. Smile more. Laugh even more and Love. Love without prejudice, without a chip on your shoulder, love because you can. Because you should. Be happy with what you have and what this life has presented to you. Shine on for the whole world to see, even if they don't get it. Help others, Regardless. As a parent, don't give up and find strength as much as you can. Because you have to be the backbone and the rock for your children.
Brendan's name means brave and bold, even in his youth. Some call it meaningful. I call it fate.
Behind his blue eyes there's more than this world could ever see. I'm very grateful that I've had the experience of learning from him and with him.
After all, isn't that a part of what parenting is?
Anyone who wishes to talk to me about epilepsy or has questions regarding Lennox Gastaut, to medications, to how do you keep your sense of self amongst all of this. Feel free to email me. lovely.bella@yahoo.com
I'm no doctor, although it feels like I am from time to time. My mindset is quite different than most on line. I'll never tell you not to try a medication, or give you the nasty side effects that my son dealt with. Because each medication is different for each person. That itself is another miracle for my son and a blog to share.
Until then.
Love madly, From the heart.
Brendan's Mom
Michelle
