October 11, 2011

Prior to Tuesday, 11 October 2011, we knew very little about epilepsy, had never had occasion to speak to a neurologist, hadn’t heard of The Matty Fund.  We had never uttered the words “Depakote,” “ketogenic,” “idiopathic.”  We had never seen a small child have a seizure.  We never knew what a six-hour EEG entailed, or a 24-hour one, for that matter.  We had never seen our child, any child, laid out on a table under anesthesia with twenty empty vials waiting for his blood.  We never knew the terror of waiting for six long weeks for the results of genetic tests the results of which would have, could have altered the quality not to mention the length of our son’s life.  We never knew the depths of people’s fears regarding epilepsy; we didn’t fully understand the stigma people with epilepsy face, the stigma Edgar would face.

Prior to Tuesday, 11 October 2011, we also didn’t know the full extent of our strength–as a family and as individuals, the extent of the strength of our family and friends.  We didn’t know that there were doctors who not only rely on their own knowledge and intuition but ours as well.  We didn’t know that we could do this, that we would have to do this.

It has been a year unlike any other–a year full of learning and growing, of steps forward and back.  We make no assumptions about tomorrow–or even today.  We are grateful for every seizure-free moment, and we keep hope alive.

One year ago today our son had his first seizure, and we have no way of knowing if his last seizure will actually be his last.  But we persevere with this beautiful boy by our side–showing us how to proceed, continually reminding us of what is important and showing us how to be.

He Has to Dance

Dear Oscar,

Yesterday at the movie theater, as the credits were rolling and a snappy song came on to conclude the film, your brother Edgar broke into a spontaneous and unabashed dance.  He was the only one who jumped out of his seat.  He was the only one who danced.  And to say you were mortified is most certainly an understatement.

You–I would say better than anyone at times–know your brother.  You know who he is, how he sees the world, how he engages with whatever is before him.  At times you have even said you wished you were more like him.  And I know you love him.

But yesterday you looked as though you were ready to crawl under your sweatshirt and out of the theater lest anyone think you’re related.

When I asked you about it later, you said you were embarrassed.  You asked why he has to “do things like that.”

And that’s precisely the point–he does.  He engages and interacts with the world without much–sometimes without any–regard for what others might think.  He feels and sees and hears what others don’t.  He is not constrained by convention.  In other words, he’s not like you.  He’s not like me.  He’s not like most of the people you’ll meet on your journey through life.

This is Edgar’s challenge, but it is also his strength.  It’s what will put formidable obstacles in his way but also allow him to achieve what others will not or cannot.

So, let him be who he is and don’t look away.  The world will not judge you on the things your brothers do, but it just might on the way you react.

Love,

Mom