Brian’s birthday party is on Sunday, and he turns 6 years old! I can’t believe how quickly the time has passed. I remember holding my son shortly after he was born for our first “skin-to-skin” like it was yesterday. His squishy, football-sized, little body fit perfectly on my chest…
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In the spirit of Halloween and the constant uncertainties in our life, I had to revisit the first risk I took for my boy, Brian. I was in the final weeks of my pregnancy, my belly was impossibly huge, and we knew nothing of Lennox-Gastaut syndrome (LGS). Everything was…
When Brian’s seizures returned as Lennox-Gastaut syndrome (LGS) after his initial bout with infantile spasms, the blow was crushing. After Jendi went through a very difficult childhood, I was hopeful that her suffering was behind her. My childhood was very unassuming, and almost all close relatives and friends were alive…
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…
Lennox-Gastaut syndrome (LGS) is without a doubt the most daunting experience I’ve ever faced. Time and time again, the seizures outsmart us, leaving us scrambling to find the next solution to provide the best possible quality of life for our son. Although our efforts have taken a physical and emotional…
When diagnosed with Lennox-Gastaut syndrome, our son, Brian, was still developing normally. Every day built upon the previous day, which was amazing to watch. His episodes consisted of dozens of small tonic seizures, but he usually recovered quickly. The hope was that we would maintain this upward trajectory. His…
Lucky 7/11 My husband and I just celebrated our “7/11”: seven years married and 11 together. We often receive props for being the “model couple.” In our circle of friends, we have been together the longest. I take pride in the fact that we are where we are today because…
As an old episode of the TV series “The Office” plays in the living room, my daughter, Coralynn, is falling asleep on the couch. Her mom, Jendi, is locked into her laptop, diligently working on her school lesson plans for the rest of the week. I’m on the recliner starting…
It’s been a long five months in quarantine. Teaching virtually while supporting my own two children and their virtual schooling was a challenge, to say the least. Doable? Yes. Bicycling uphill in reverse with no hands while reciting the digits of pi is also doable, but I’m not jumping at…
On my son Brian’s first day of kindergarten, he woke up nicely, babbling to himself in his bed. When I heard him singing to himself, I jumped out of bed and administered his first dose of morning medications. I took him to the potty, then walked him to his…
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