We were having fun running back-to-school errands with Grams on Monday when Trevor had one of his big, scary, pull-off-the-road seizure events. I tried to remain calm, but found myself shouting at Bristel. In her fear, she was repeating my name over and over again. In my fear, I lashed out at her. It was raw and crushing and terrifying. After the larger events, there is this span of tangible quiet while we collectively catch our breaths. Epilepsy's menace had reached in and constricted our hearts with all the terror stricken possibilities. Every person in the car was affected by that seizure. We needed a minute to recover.
Later, I held Bristel and wept with her. I begged her forgiveness, repeating, much like she had done with my name, how sorry I was and how I wished her heart didn't have to endure such crushing sorrow.
That night I dreamed that I lost him in a crowd. He'd let go of my hand and simply vanished. It felt so real that it took me a minute after waking to convince myself it was just a dream.
Yesterday he had a mild seizure in the morning followed by 8 precious hours without another. We haven't had a seizure-free stretch that long in months. He ended the day with four seizures tallied in all. Three more striking him later in the day so that we tallied 4 in all before bed.
Last night I dreamed the same dream. Different location. Different crowd of people. But once again, he let go of my hand. I watched him round the corner in front of me in slow motion. He never looked back. One minute he was there, the next...gone. With heart pounding, I raced around the building looking for him, screaming his name. I slammed into Toby and sobbed that his brother was missing. He joined me in my frantic search.
Then I was waking. Heart still racing. Eyes wet. Thanking God it was just a dream. Just a silly dream. There he was, climbing on the bed to wake me up himself.
4 comments:
I've always felt that having a child with epilepsy was like watching your child cross a highway and not being able to reach them or help them. They navigate across the road and you never know when they're going to get hit - your dreams remind me of this. It's a horrible feeling and unfortunately it really is how this feels. The seizures are such a looming threat - you can never truly relax.
Years ago when my daughter was younger she was with my son on my bed watching tv - she had a seizure and fell off the bed - hearing it happen, I panicked and yelled at my son - My daughter was fine - except for a chipped tooth but I felt horrible that i yelled at my son and he, of course, felt responsible. Even after years of seizures - it's still a flight or fight response with every one. We just do our best and keep going.
Thank you for sharing.
The highway word picture is perfect.
Clearly, with this relapse, my heart is processing the pain even in sleep.
My momma heart is aching for you all. Things we say when we are overcome by terror haunt us. And to watch our precious children hurt, whether physically or emotionally, doesn't leave our minds even when resting. It's a wonder you can even sleep. I'm praying for your precious family. And I'm so sorry you have to fight this terrible seizure monster!!
@Brenda...your prayers are meaningful to my heart. This relapse has been incredibly difficult. This is not the same journey as when he was a baby and the impact has been heavy on all of us. Knowing there are others "out there" thinking about and caring for our family...is strengthening.
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