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The joy of shared experiences.

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.

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  1. Thank you for sharing with us about the wonderful conference and a inside of your life with Nick! I truly look forward to more of your blogs

  2. It was so great meeting you briefly Sunday after the conclusion of the conference. I look forward to reading more of your blogs. It’s so comforting to know we’re not alone in this battle. And you’ve certainly had a long one. Kudos to you.

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Announcing that I have finished a book with the working title of “The Fairy Fort.” I am currently pitching it to publishers. Keep checking back to watch the progress of my newest novel.

Here is a quick glimpse of the story.

Sarah Doherty is an 18-year-old living in rural Ireland at the tail end of the Great War. Plagued by severe epilepsy, she is protected by her parents and lives a sheltered, secluded, lonely life. The Fae, local Irish fairies, interfere with her life. She falls forward a century in time through the local fairy fort of standing stones. She had a seizure in 1918 and woke up in 2020. The 21st century world includes life-saving prescriptions, physical comforts and the independence and freedom she seeks. The locals are welcoming and Andy Mclaughlin, a handsome young historian, is intriguing. She doesn’t want to return home.

Then a letter arrives from Boston divulging the story of Sarah and Andy’s lives that are deeply entwined in the previous century. They are not yet in love but as they seek to verify the letter through online resources, they feel a growing obligation to their unborn family and to each other. What would happen to their posterity living in Boston if they don’t return to 1918? Even if they do make it back, her parents can never know what happened to her or that would change everything.

This Young Adult time-travel romance explores the question: Do we have the freedom to make choices or is free will an elaborate illusion?

This is my third book. I love reading time travel romances. I am an advocate for epilepsy awareness because my 43-year-old son has intractable epilepsy. As a genealogist specializing in Irish research, I live part of the year in the village where the story is based. I wrote the book to help young adults understand that difficult situations can change your life. Sometimes miraculously.