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Epilepsy

Can’t someone make the hard decision for me?

As a parent, I know that we are called upon many times to make decisions for our children. Some choices are easy. The best thing to do is clear and we breeze-on through that situation. However when the full consequences of the different choices are not clear, then it is hard. Nick has been having

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Hypervigilance can steal our good health.

Recently I was told that the definition of “hypervigilance” is an enhanced state of sensory sensitivity accompanied by an exaggerated intensity of behaviors whose purpose is to detect activity.  It may bring about a state of increased anxiety which can cause exhaustion.  The doctors explained to me that this was part of what I have

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How’s Nick Keeping?

Arden and I are back in Ireland with Nick after a year gap.  Nick is mostly staying in the house while one of us does the shopping and runs the errands.  Since Nick is not out much, people are asking about him.  I never really know how to answer this question.  Oh it should be

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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

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When does the Christmas Season start?

Nick has strong opinions on what he considers the correct timing of things.  Yesterday was Thanksgiving and today begins the Christmas season.  First thing this morning he began singing Christmas carols.  Sometimes during the year, I tease him a little bit.  I will start singing Christmas carols when it is not between Thanksgiving and New

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We all need support from others.

There were many things that I loved at the second day of the LGS Foundation Conference in Orlando.   There were thought provoking presentations on various topics including LGS research, new drug therapies, surgical options, devices, plus genetics and precision medicine.   We had a great banquet and dance.  It was a wonderful day. I took a

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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

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My response surprised me!

This week we received a follow-up call from Nicks neurologist. Nicks seizure med blood levels weren’t optimal so he increased one of the doses of one of the meds.  It is a dose Nick has taken before when we would be traveling and he needed extra meds to combat the stress of changing time zones.

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Stop and smell the roses!

Every once in a while we all need a break from our typical routine.  When I was a young mom, a wise man told me that “A change was as good as a rest.”  We all look forward to our scheduled vacation time.  However, if we are overwhelmed, anticipating our future vacation might not be

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My child has seizures and a wheelchair, can we travel?

This blog I wrote is in response to queries I have received.  The answer is YES you can travel.   However some pre-planning and organization can help make the trip more relaxing.  Planning Your Trip: Familiarize yourself with where you are going.  There are websites and blogs about most major cities.  How accessible is the

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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.