As humans, and especially as caregivers, we do not give ourselves enough credit.
It’s a widely accepted expectation that we should always strive to do better. I don’t necessarily disagree with that sentiment, as without direction or goals in life, how are we to be successful? With Lennox-Gastaut syndrome (LGS), we have no choice but to do better and constantly work toward seizure-freedom.
But after a jam-packed and taxing day, I asked myself if I’ve really taken the time to give myself a pat on the back.
I get so caught up in the whirlwind of caregiving, working, and parenting that I often feel I am stretched too thin. I make mistakes and forget things: appointments, emails, lesson plans, doses, etc.
My worst critic? Myself.
The more I beat myself up, the greater my insecurities grow, and the less able I am to celebrate myself. Most of my insecurities come from my role as an LGS caregiver. LGS has chewed me up and spit me out in more ways than one by this point.
I get stage fright in the middle of a store when our son, Brian, begins seizing. I try to flee to a quiet aisle, like the candle or magazine aisle, to avoid the stares. If anyone sees, I know they’ll instantly judge and wonder why I’m not calling 911. My response of, “This is his umpteenth seizure of the day, and he has them every day. Please, don’t call 911,” would only raise more suspicion.
I’ve convinced myself that every stranger around me will view me as an unfit parent in the event that Brian suffers a seizure in public.
When I take a moment to look at that situation with a mindset of grace, I realize what a feat it is to repeatedly keep my composure and render aid while my son seizes. With every seizure, I hold my breath with him. I want to fall to my knees and rip my hair out at his suffering, but I make the conscious decision to grit and bear it in order to do what needs to be done.
Despite it all, I also have a content son to show for it. Brian reminds us over and over again that he is happy and seeks only the simple pleasures in life.
For that, I deserve a pat on the back.
Note: Lennox-Gastaut Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lennox-Gastaut Syndrome News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Lennox-Gastaut syndrome.
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