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.
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