How Time Is Like a Game of Tug-of-War When Your Child Has Epilepsy
Before you become a parent, you are continuously told, “time goes by so fast,” “cherish every moment,” “before you know it, your children will be out of the house,” and so many other phrases that insinuate life is about to move a whole lot quicker. You smile and nod at everyone who tells you these phrases, and you might even think you understand what this means, but then your child is born, and your comprehension of those words and phrases take on a whole new meaning.
From the second your child is born, you are instantly placed into a lifelong game of tug of war with time, wishing time would speed up, yet simultaneously begging for it to slow down. When your child has epilepsy, all the above takes on a whole new meaning.
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That moment you witness your child’s first seizure, or the moments following the realization that what you just witnessed was your child’s first seizure, the concept of time takes on an entirely new meaning. Seconds have never felt so long, yet by the time the next seizure occurs you wonder how time flew by so quickly. There is now a new version of tug of war, this time it is wishing time would fly by faster so a seizure could end, but then praying time would stand still so you never have to experience those moments ever again. Yet just like with everything else, the clock does not slow down, it does not stop, it just continues to tic on by.
If your child has epilepsy secondary to a life-limiting diagnosis, the tug of war with time takes on another shift. Your life revolves around time and an unspoken ticking clock that only you are aware of, one that can make you cling to every aspect of the seconds going by, no matter how good or bad they are spent. You prefer for them to be spent with your child experiencing more happy moments versus moments filled with seizures or other medical complexities, but yet you will take any and all moments you are gifted with him/her.
Living life with a child who has epilepsy makes a person appreciative of time. Never knowing what each second holds, you learn to accept whatever comes your way. You soak up every second, hoping and praying it won’t be the last, but with the fear of the unknown, and realistic potential of that occurring keeping you on guard and in the moment. You do your best to always be in the moment, but try not to be frozen by it. You anticipate the next seizure while trying not to live in a constant state of fear or panic.
One of the hardest parts of living life with a child who has epilepsy is learning the balance of holding onto time, while also trusting enough to let it pass by.
Randi Zaila is a mom to five little people(one in heaven) in Phoenix, Arizona. In addition to blogging about her fourth child’s daughter’s journey with CDKL5 and the emotional components after her death in February 2020, at SonyasStory.com, she spends her time being a chauffeur and picking up items from the floor. She also works as an SLP and can be found sipping on a tall glass of wine, margarita, or a large cup of coffee.
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