Moms of Epilepsy
Kelly – Mother of Trystan
It is strange how certain moments in your life stay with you. Sometimes not an exact picture, but maybe an impression, a smell, a feeling ... some moments haunt, others bring joy and a sense of fulfillment, warm feelings. I don't remember all of his seizures very accurately, but the first one will be one of those moments. When I think about it, I remember the confusion, helplessness, and sick feeling in the pit of my stomach. I had no idea the road we were heading down. How much that pivotal moment would forever change his life.
Epilepsy comes in many different forms. It is such a large encompassing word. A word to put a label on so many varying types of currently unexplainable brain malfunctions. The actual physical seizures that Trystan experienced are such a small facet of what epilepsy means to him. Life altering drugs, developmental delays, unseen nerve discharges that literally affect his sleeping and waking hours all working together to create a child who spends much of his life now stressed, tired, sad, and I think angry.
He has these strange and wonderful moments of clarity when the Trystan we used to know presents himself for a fleeting moment in time. The other night when I was kissing him good night, he got this strange look on his face, he put his hand to my cheek, stared at me intently with an unusual amount of wisdom for one so young, and said, "You look..."
I finished for him: "old?" He smiled and traced my laugh lines. In my mind I thought, "There you are, Trystan. Where have you been? Please stay with me."
I try to remind myself often that I need to rejoice and enjoy those times. Take each day as it comes, and don't let his unTrystan-like lack of a smile in the morning dictate my day. Accept the Trystan that is without losing faith that the Trystan that was will return for a longer period next time. Faith that this too shall pass.
Kelly Bitten
Minden, Ontario
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