With Lennox-Gastaut syndrome (LGS), you don’t get lucky for very long. The honeymoon phase we enjoyed over the summer has passed, and we’re right back into unknown territory. What do we try next? Because our efforts are not working.
As our son Brian’s seizures persist and our options dwindle, I am feeling that all-too-familiar sense of losing control. The combination of stress, anxiety, and exhaustion has set in, and I’m beginning to feel the effects of parental burnout.
As my husband and I were strolling through the neighborhood today, we came up with a plan for simple ways to take care of ourselves. We made sure to pick activities that we have done before and can manage to implement right away.
Speaking of strolling, this is one of our favorite and easiest ways to decompress, especially now since we have Brian’s adaptive stroller. We’ve recently been walking with some of our closest friends and their little one through our local nature park. Sometimes, the dads will jog with the kids while the moms spend quality time catching up.
My husband and I often reflect on how uplifting these walks are, for our friends, too. Whether alone or as a small group, it’s nice to take the mask off, breathe in the fresh air, and walk the endorphins into action.
Take a day off
Schools have reopened here in Florida, and I am right back into teaching. I’ve always told my colleagues and friends that school is my happy place. No matter the challenges, each day is rewarding because of the sense of camaraderie among my fellow teachers and the simple gestures of gratitude from my scholars.
These kids make every second worth it, so I rarely ever call off. I can genuinely say I love my job!
However, the demands of teaching, coupled with the demands of being an LGS caregiver, can be a tough act to balance. As times have gotten harder with Brian, I reached a point where I had to say enough is enough.
I decided to do something I haven’t done in a while and took a day off for me. I wanted to sleep in. I wanted to get my favorite iced coffee with the coffee ice cubes and watch scary movies. And then — I wanted to do nothing.
I can’t do any of these things if my kids are here, so it had to be during the week. The day I took my absence request form to the front office was one of the most invigorating feelings I’ve had in a while.
Date nights in
These are not just for married LGS parents, but single LGS parents, too. After my husband and I put our LGS pup to bed, that’s when we start our date nights in. Sometimes I take a date night in all by myself!
Since it’s October, we’ve been setting the ambiance in the living room by dimming the lights, plugging in our star projector, and flipping on the switch to our faux fireplace. The scene illuminates the spooky Halloween décor.
From there, we pop open a good bottle of wine and stream the next binge-worthy TV show or horror movie. Wine not only tastes good, it’s also good for the soul.
Anyway, this time we dedicate to each other is one of my favorite ways to step away from our reality, even for just a little bit. For a fleeting moment, LGS takes the back burner.
Whether through journal entries, blogs, or columns, writing has always been an outlet for expressing the tragedies of LGS. For me, it began with journals my husband and I would write to each other. Then, it continued with a Facebook page we dedicated to our son’s journey with LGS. Finally, it extended to column writing.
In everyday conversations, it’s hard to bring up how we really feel when someone asks, “How is Brian doing?” The response is not only a buzzkill to the person striking up the conversation, but it’s also excruciatingly painful for us to explain. Writing allows us the opportunity to describe in detail what is happening, while giving the reader a chance to fully process our reality.
If there is anything LGS has taught me, it’s that there is no rhyme or reason to it. What may work for some will not work for others. Nonetheless, the need for self-care is paramount. Our ways may not be your ways, but the need is still the same. In sharing our ways, I hope we can inspire others to find their ways.
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.