Monday, March 16, 2015

Double-Edged Sword

March, Epilepsy Awareness month in Canada, is here again and the update on our guy couldn’t be better. He is happy, healthy and busy catching up.

Over the past seven years, there have been many ups and downs – a first seizure seven years ago, followed by many more, began  a perilous journey. At first there were many seizures each day, varying in intensity and type, loss of speech and awareness – we were all on the roller coaster to hell. But you do what you can. You cope. You have no choice.

Many tests, many doctors, much angst and over a year later, our guy’s drug combination finally controlled his seizures. He got stronger, became more aware. He began talking again. But the side-effects kept him unfocused and tired, making it difficult for him to learn or play games that had rules to follow. He was easily distracted, came unglued easily, and he had sensory issues, especially with food.

There have been ups and downs at school – a couple of amazing teachers have gently guided him but there have been others who have exemplified the quote, “The most important thing a child with special needs learns in a school setting is that he is flawed and that flaw is the most important thing about him.” We hope for the good ones. Preserving his rights and his dignity has been an ongoing challenge for his mom. But there have been wonderful teachers, amazing summer vacations, hikes with his mom and brothers, movie nights, snuggles and much love.

So here we are, more than half way through grade four. Our guy has been drug-free since Christmas. His amazing teacher guides him with love and respect and is as excited as we are at the rate his attention span, his interest level, and his reading ability are improving. For the first time ever, he doesn’t want to miss school. He is trying new foods, he is learning to swim and this past winter he went skiing.

But it is a double-edged sword. On one side there is hope – hope that the seizures don’t return and that our guy never has to spend another minute in that lost world he inhabited for six years. We hope he continues to grow stronger and learn and succeed. Dare we hope there is a bright future for this young man who is so kind and so bright. 

The other edge of the sword is fear – the incomprehensible fear that in the blink of an eye, our guy’s world can be turned upside down again with a return to seizures. There are no guarantees, only the hope that this nightmare is over. There are lesser fears – next year our guy will go off to middle school where he will be a little fish in a big pond. Will he find teachers that will nurture and gently guide him or will our guy be destroyed emotionally yet again? He will have friends but there will also be bullies – can he cope? Can his big brother be close enough and strong enough to help him? Hope and fear go hand in hand.

We wait in fear for the other shoe to drop and we hope that it does not. We remember the terrifying day long ago and the long physical and emotional struggle to get our guy back. We look to the future with optimism. Even though the journey has been terrifying at times, frustrating at others, we have no choice but to go forward and no desire to go back. We are all changed but our guy is doing well. The journey has been worth the struggle. Today our guy is an amazing young man.

 March is Epilepsy Awareness Month in Canada. Go to http://www.epilepsy.ca to learn more about seizure disorders. Education is the key to understanding!

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