Arden, Nick and I are in Orlando, Florida, attending the LGS Foundation Conference 2017. For those of you who don’t know, Lennox-Gastaut Syndrome, or LGS is the syndrome that Nick has. It is a rare epilepsy disease that shows specific characteristics including multiple types of early onset hard to control seizures with slow spike and wave pattern EEG, and cognitive impairment.
Before yesterday, I had never met anyone besides Nick who had LGS or sat in the same room with any parent of a child with LGS.
Today as I sat in a conference room I was deeply touched. It took me a few hours to process what had happened. There were parents with their kids of all ages, and some parents attending without their kids. We saw amazing wheelchairs, kids with helmets, parents assisting older kids to walk with the awkward gait that Nick exhibits. I call them kids because Nick at 38 is the oldest one here. Nick had his string, his brochures and his airplanes. Other kids had toys, boxes or other objects that they were perseverating on. Spontaneous vocalizations and loud explosive laughter was heard throughout the day but they didn’t interrupt the medical professionals presentations. Those individuals have dedicated their careers to researching ways to reduce and ultimately end seizures for patients suffering with rare syndromes like LGS.
Later, after the meetings today, in the hotel restaurant we passed by a family sitting at another table. Their young child was arguing with the parents over menu choices. That in itself is not unusual, but her pink helmet and colorful wheelchair set her apart from typically developing children. They were attending the LGS conference too. I hadn’t met the mom yet and I couldn’t read her name on her name tag, but when our eyes met, we both nodded and smiled. Silently saying to one another, “I understand. I get it.”
I have had times in raising my other kids when I knew that other moms had the same experiences I had. Knowing that someone else has felt what I felt is comforting. For instance, that first day I waited outside the kindergarten room door to pick up my oldest son, I looked at the faces of those other moms. They had the same day I had. I was both excited to have my amazing child start school and sad that my baby was now going to school. Through those moments waiting each day for our 5-year-olds, I bonded and connected with those other moms. I had a peer group.
That is what I experienced today for the first time in 38 years of being Nick’s mom. I found a peer group. These moms that I met at this conference truly do understand what I have experienced. I am grateful.
Please share this blog if it resonates with you or you know someone who might benefit from it. If you want to get a copy of the book as soon as it is available, click here to sign up.