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What would I do?

My son Nick has a rare, debilitating, life threatening disease called Lennox Gastaut Syndrome.  For over 38 years I have been consciously aware that with LGS he has an increased risk of unexpected premature death.  There is even a name for it.  SUDEP, sudden unexpected death from epilepsy.  This hangs over me every day.  When the seizures don’t stop, when he oversleeps in the mornings, when he is sick with a normal illness, when he…   The fear is constant.

Last week a FaceBook friend’s son did pass away.  He had LGS.  He was 12.  I have cried for her and her family.  I have sent her messages of support.  I have prayed for her.  I don’t know what I would be doing today if it was one week after my son had passed away.   The funeral would be over and everyone would be going back to their own lives, but my life would be completely changed.

I have experienced the grief of losing close friends and family members.  I understand that, but this is different.  It is the loss of a family member, a child, and someone who is completely dependent on you.  It is also a loss of one’s job, and daily duties.  It is even the loss of a portion of personal identity as a caregiver and an advocate.  There is potential guilt of, could I have done anything more for my child?  Was there something I didn’t do?

The basic routine of everyday life would immediately change.  Loss is profound and I hope that when the day comes that I am walking down that path that I will remember the joyful moments and I will laugh in the midst of my tears.

Since none of us know exactly what we will do when we have this experience, let’s all commit to suspend judgment and avoid criticism of others as they are walking through the dark days of their grief.

I have been invited to submit articles to a couple of online publications.  I am pretty excited about this incredible opportunity.  This article was recently published on the PatientWorthy.com website.  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, be sure to sign up.

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  1. I fear for my son’s life every day. I have nightmares about it, even. I hate living life in fear but there really is no shaking it. The fact that just having the title of LGS puts them in a greater chance of SUDEP. It’s scary as hell. I’m sad to hear the passing of the 12 yo LGS warrior–A life taken way too soon.

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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.