No matter how cliché it sounds, if there’s anything I can get across as a Lennox-Gastaut syndrome (LGS) caregiver, it’s that the experience is truly an emotional roller coaster. At the time of writing my previous column about signing off, I was at one of the lowest lows on this sinuous journey.
I felt cheated. My husband and I set ourselves up for a life that was seemingly ripped away from us. I was stuck in the rut of longing for the life we envisioned. It’s time to let go of what could have been and stop dwelling in my self-perpetuated anguish.
I was lost, once again in the unknown. Our son, Brian, continues to battle unrelenting seizures, against which our current treatment regimen is no match. Do we give up now? Hell, no.
I was jealous. I couldn’t face the happiness and accomplishments of other children of family and friends. I signed off to look away and feel sorry for myself. But now it’s time to sign back on, press the “heart” button on photos of the littles in my life, and set out to do what I feel I’m meant to do.
Since I signed off of social media, more than 50 new people started following our Facebook page, Little Brian’s Big Journey with Lennox Gastaut Syndrome.
During this time of my emotional sabbatical, my husband, the yang to my yin, posted a video of Little Brian bouncing happily in his favorite chair. We’ve gained our new followers since that video alone.
It was also from that very Facebook page that I gained the opportunity to write as a columnist for BioNews, the publisher of this website. Signing back on and seeing what we accomplished with just one video was all the reminder I needed about my purpose among other caregivers.
There is more for us to do as caregivers than to just suffer.
I emphasize “just” because suffering is an inevitable part of caregiving, especially if you’re a caregiver to your own child. The hardest part of my time away was acknowledging the pain I was feeling and letting it take me away in its undertow.
Even after coming back from my time away, I was still ashamed to share what I had written in my last column. As a mother, a teacher, a colleague, a daughter, and a friend, I was afraid to share what I was going through.
I didn’t want to be a burden.
In reality, the burden I thought I would be on others was merely the burden I was carrying myself.
In my last column, I started by saying, “it’s good to be back and writing again,” and all that followed was negativity. I was afraid that I was sharing too much of my pain for the public to handle.
What I forgot, as a columnist, is that this is the safest place to share my pain and difficulties as a caregiver. If there is anywhere for me to be open about my disabled child and the pain it brings me to be his caregiver, it is here.
So, like a phoenix rising from the ashes, if you will, I’m back. I am ready to take this pain and turn it into something useful. I hope that by continuing to share my experience as a caregiver, my words will embrace others who share the same pain.
You are not alone.
Take the time to cry and to feel. Your pain is your greatest barrier, but you will rise again.
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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