He Knows

I asked him how he was feeling as I held him last night.

I asked him how he was feeling about his epilepsy, about the seizures, about the medicine.

And he said, “It’s hard, Mommy.”

I told him I would be there for him, that I would never leave his side.  Ever.

And he said softly, “I know.”

And the fact that he knows gave me the strength I needed to fight along his side for another day.


10 thoughts on “He Knows

  1. Samantha,
    The combination of your exquisite writing, and the soul-revealing photos you have of your family have perhaps done more for the awareness of epilepsy than any other format I can think of. The fact that I know Edgar, and you, and that I had the pleasure of his company connects me to him. So, my heart melts when I read his own words. And I long for him to return to the days of no worries, endless imagination, the joy of every minute. Does he know that behind your promise of always being there is a huge community wishing, praying, pulling for him with love? Let him know he has his own fan club and we send love to him each and every day.


  2. Edgar is his own reward. His idiosyncrasies make him who he is, and as mindful as caregivers have to be of them, he deserves to feel challenges can be taken in stride, adjusted to, dealt with, and motivating. As erratic as epilepsy is, Edgar is like every other kid, and unlike every other kid and helping him achieve the balance is the job of all of us.

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