Little Brian is awesome.
As I take this time to reflect on the totality of the life that currently exists for me, I struggle to maintain a positive outlook. Lennox-Gastaut syndrome (LGS) has completely upended the plans I had for my family. My entire upbringing consisted of compiling good choices together to earn good outcomes, with very little time spent on preparing for extremely unexpected scenarios like LGS.
Although I was taught all the essential, fundamental life skills, I certainly was not taught anything about intractable epilepsy. In fact, my first exposure to such a condition was in 2013 when the positive effects of CBD oil were first reported. Suffice it to say, Brian’s sudden and unfortunate descent into intractable epilepsy (from infantile spasms to LGS) has devastated our family’s entire existence. I assume it is safe to say that this sentiment is widespread among the LGS community.
As I sit in my (our) collective misery, I immediately recognize my fatherly failure. I fail to recognize that, as the father of my child, I am intrinsically obligated to be the strong, stout, and guiding figure in Little Brian’s life. My job is to be strong for him in his most vulnerable times. My problem is that I’m not sure that I can sustain this continuous tumble down the rabbit hole. No one asks for or deserves this.
While I struggle to maintain my composure, I am reminded that Little Brian’s battle isn’t mine. I am not the one directly wrestling this horrible disease. Since his conception, this little man has persevered. In his first trimester, we suffered a subchorionic hemorrhage and feared we lost our son. However, the ultrasound showed his tiny cluster of cells thumping strongly, overwhelming us with relief. “What a miracle!”
Eight months after being born at a healthy 9.5 pounds, Brian was diagnosed with infantile spasms. Thankfully, we were able to get him treated shortly after the onset of the seizures. He responded extremely well to the ACTH treatment, becoming seizure-free within three days. I refer to the time that followed as “the good days.” Brian is the ultimate champ.
About a year later, the seizures returned. Eventually, we identified the diagnosis of Lennox-Gastaut syndrome. Many of Brian’s developmental achievements have subsequently been “unreached,” to put it lightly. Yet, through it all, this little guy has maintained the best attitude I have ever seen.
Almost every morning, I am awakened by the wonderful sounds of Brian’s little voice, “singing” as freely as his little heart desires. Although his freshly-blossoming ability to speak has been snatched from him by this horrible disease, he’s still able to express joy. Through his humming, buzzing, and clicking, I can sense that he is happy to be awake, alive, and ready for the day.
He also expresses a desire to thrive. I have never seen any man consume as much sustenance per square pound as little Brian has, let alone a 6-year-old. This boy can eat! He used to be able to say “food!” and “more!” in his younger years, and Brian only seems to love his food more as he grows. Though Brian’s words have left him in the last two years, his physical confidence has grown. If Brian is hungry, he will actively seek anything resembling food, snatching it from the tabletop to try to eat it. What a good boy!
Eventually, Brian finds his way out the front door, down the driveway, and onto the backseat of our car. Although we don’t plan on driving anywhere, Brian insists on marching out to the car and parking himself right there. I immediately see the allure.
Like a man ahead of his time, he gently slides down the backseat of the car and firmly props his legs up on the driver’s seat in front of him. As his arms swing casually over his head and he smiles at me, I know his perception of comfort is far beyond anything that I can comprehend.
Brian loves to wrestle. He is the ultimate cuddly buddy ready to hug and squeeze. He loves snagging my hair and glasses while receiving kisses all over his face. It makes him so happy, and I guess that’s all I can ask for.
While my childhood was mostly “easy,” Brian’s life has been horrifically difficult, through no fault of his own. I will do my best to keep Brian happy and safe for as long as I live. His daily smile, singing, and cuddles remind me that true strength can be as gentle as a breeze. That’s all I can ask for.
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