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.


3 thoughts on “October 11, 2011

  1. I HATE EPILEPSY — but boy do I LOVE the people that epilepsy has brought into my life!!! So happy Edgar is doing so well!

  2. Oh Samantha! I admire your families strength. I, too, never knew the depth of epilepsy until you shared some of the events that your family and Edgar had experienced. What a brave family! What a brave little boy! After reading your blog on the anniversary of Edgar’s first seizure, I felt a chill and then a warmth take over my body…holding back the tears. The extraordinary love and prayers of your family and friends will always surround you, offering support in whatever you are challenged with. Goodnight little one. You are one fortunate boy!

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