On a “normal” morning, the house would be quiet, aside from the soft humming of the appliances and the clicking of meandering dog paws stepping on the tile floor. My wife, son, and daughter would all be quietly asleep, hopefully dreaming of joy and happiness. Most would consider such a scene quite “normal” for any young family with a bright future ahead of them, excited for a new day.

Except I’m not sleeping peacefully. The sun’s not up yet, but I’m awake, staring at the ceiling, adrenaline flowing. My heart beats rapidly and my breathing gets shallow. I check my phone and see that the usual day is due to start any minute. I know what to expect, what would normally happen. And I don’t get to choose my “alarm clock.” I know that once this ride gets started, there’s no getting off until bedtime.

At that point, the peaceful ambience of the normal morning is shattered by the instant, sharp shriek of my son, Brian. As soon as he screams, my wife, Jendi, and I are already hastily cutting open the zip tie and unzipping his bed (he sleeps in a sort of tent, which would need to be kept closed from the outside so he wouldn’t leave and injure himself in the middle of the night). We burst into his bed tent and turn his convulsing body on his side so he doesn’t choke. I would hold his head in my hands as the tonic-clonic seizure runs its course. Brian’s lips would turn blue and his eyelids would flutter, almost as if he was being electrocuted. After a minute or two, the seizure eases up, but Brian’s lips are still blue. He’s not breathing. WHY ISN’T HE BREATHING!?

In what is usually only a second or two after his seizure ends, Brian takes a huge breath and rolls over, incapacitated but back to peacefully sleeping. Although uncommon, epileptic seizures can kill you. Jendi and I take a moment to appreciate the fact that he’s still with us, zip up his bed, and start preparing ourselves and the kids for school. Brian’s school bus would be arriving soon to pick him up. Everyone prepares themselves for the day while Brian’s sleeping; we can’t waste any time.

After packing his lunch and picking out his clothes, I open up his bed and start to gently wake him for school. I know he really wants to sleep, and who can blame him? At the age of 5, the little guy has been enduring daily seizures since he was 8 months old. That tiny time frame was all we had that could be considered “normal.”

Brian’s initial diagnosis was infantile spasms (with no identifiable cause). After the initial treatment, Brian achieved about a year of seizure freedom. Although we were hopeful that the worst was behind us, the seizures returned again. Brian’s current diagnosis of Lennox-Gastaut syndrome has been devastating emotionally, to say the least. However, I couldn’t comprehend just how pervasive the impacts of LGS are on a practical, day-to-day basis. From big tasks like planning a vacation, to little tasks like folding laundry, everything revolves around Brian and his LGS. From the time he wakes up until the time he goes to sleep, all daily activities require meticulous planning and teamwork. Through better days and worse days, we are constantly adapting to different ways of doing “normal” things, like eating dinner together, exercising, and general living. Life has given us an opportunity to completely recreate what “normal” means to us as a family. Every day, Brian helps us redefine our “normal” routine. As treatments continue to improve and awareness grows, my hope is that our “normal” can be a happy one. As this current pandemic has also shown, most people have to adapt and create their own “new normal” daily routine at some point.

Brian would eventually gather enough strength to wake from his morning daze. While he stretches and rolls around, I’m trying to change his diaper and get him dressed. I check my phone and see there’s only a couple of minutes until the bus arrives. Brian still needs his medicine! Jendi quickly administers Brian’s morning dose and I get his shoes on. She gets his special bus chair outside while I get his safety harness and helmet on. We can’t forget the helmet — safety first! Brian’s bus arrives, and he would smile. Brian seems to really enjoy school. The bus assistants load Brian into the lift and whisk him away to see his friends. I’d love to take a nap at this point, but the day has only just begun! Where’s my coffee?

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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 Services, and are intended to spark discussion about issues pertaining to Lennox-Gastaut syndrome.