It’s good to be back and writing again.
My last column was posted over a month ago, before the winter holidays. I wish I could say the entirety of my time away was spent in merriment and relaxation.
Alas, I am a Lennox-Gastaut syndrome (LGS) caregiver and parent. Seizures and regression have no issue working double time over the holidays.
I’ve gotten to the point now where LGS is such a chronic and pervasive aspect of our lives that I can’t even face the accomplishments of my past or the current celebrations of my family members and friends.
I feel selfish and weak.
It didn’t become clear to me how isolated I felt until I started seeing posts and reminders on social media.
It started with Google Photos and Facebook, with their well-intended notifications of “memories.” “On this day” five years ago, Brian could walk confidently and freely without a helmet. Four years ago, Brian could jump up and down while cheering for gravity-defying, chest-rumbling “ga-gas,” as they passed him by to land at Tampa International Airport.
Any time I check these notifications, all I’m reminded of are the things Brian used to be able to do.
It’s just a memory.
I try to tell myself that looking back is OK because it gives us something to strive for. We figure he learned it before, if we try hard enough or figure out the right concoction of medications and therapies, maybe we can get him to express it again.
Despite our best intentions, every attempt to bring our boy back to his full potential is swallowed by the entrails of his epilepsy.
One step forward, five steps back. Always.
Watching the “See how they’ve grown” presentation on Google only brings me pain. Instead of watching Brian grow and bloom like other children, I watch him slowly lose himself: his speech, coordination, mobility, freedom, vitality, etc.
In my very best dreams, I hear his voice and see his sweet, unmasked little face talking to me playfully. I cry profusely at this development, thinking we’ve finally crossed a huge hurdle, and then I wake up to my nightmare all over again.
He can’t talk, walk, or live like many other kids do, and it makes me jealous and angry.
Then I try to turn my attention away from my own “memories” and try to distract myself by scrolling through Facebook and seeing what the kiddos of other people are up to.
Recently, a viral “cuddle your toddler” challenge has developed, in which parents distract their cartoon-entranced toddler by lying on their lap to see how they react. Mothers and fathers are usually met with warm embraces, gentle caressing, or adorably wet kisses.
It’s truly heartwarming.
I knew better than to record myself doing this challenge, but I still tried it anyway. To Brian, no matter who is in his lap, it is an invasion of his space and too much for him to process. All he does is try to shove me away.
I wish so badly that the affection and love I share with him could be reciprocated like other parents get to enjoy.
Logically, I know that this is his normal and, of course, he is special, perfect, and loving in his own way. I’m only hurting myself for holding on to and longing for what used to be.
Being in this vulnerable state, I realized that I needed to stop subjecting myself to all of these painful reminders. I’m not strong enough right now to face it. We need to focus on the here and now to do what needs to be done for Brian at this very moment.
I had to sign off. Not just from social media, but from friends and family, too.
I’ve taken time to explore new ways to cope with my ongoing trauma. One of the good things to come out of this pandemic is access to telehealth appointments instead of face-to-face appointments. I’ve always hesitated to seek therapy for myself because of the time I’d need to spend away from Brian. With telehealth, it seems to be a more feasible option that I am ready to explore.
When the tank is empty, all that can be done from here is to fill it. As my husband always says …
“I’m trying my best.”
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.