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I hate seizures.

Don’t worry this picture of Nick was not taken recently.  It is from a few years ago. However, lately I have been reading posts and queries from parents of newly diagnosed children with epilepsy. My heart breaks for those families over and over.  As I read their stories, I can remember all the swirling emotions of my own.  When Nick was diagnosed with epilepsy, I desperately wanted to find something.  I wanted to believe that there was a cure, or a particular new drug therapy or a treatment that would make the seizures go away for good.  I had hope.  For some kids and their families, that does happen.  For others, like Nick and our family, that is not our story.

Even now, with 37 years of experience, every time the seizures start, I am a little bit surprised.  Whether it has been a week or a few months, or longer, since the last episode, I always hope that we have finally found it.

So in those first moments of helplessness watching my son in the midst of his seizures, the swirling emotions return.  I want to rail at the heavens, and I want to be humble and accept Gods will.  I want to be strong for Nick and for those who are witnessing it and I want to run away and hide.  I am afraid that they won’t stop and I have faith that they will.

With my thoughts running around in my mind, Arden and I step into the dance that we know so well.  We time the seizures, we chart the data, we talk to the doctor, we administer the rescue medicines in the prescribed pattern.  Over and over, for hours and then sometimes, when we have followed the entire protocol and the seizures haven’t stopped, we call the aid car.  The paramedics come, and the ambulance takes us to the hospital where they battle for us to stop the seizures.

So far, every time, they have stopped.  We are told that someday they might not.  That frightens me too.  I have watched some of the videos posted by these new parents, asking others if what is shown is a seizure pattern.  They express that they are new at this.  They say that they don’t know yet what to look for.  How can I tell them that will never change, you will always wonder.

It is hard to explain, but everyday I wonder if today is going to be a seizure day.  Out of habit, I react to every odd movement, sound or response, questioning if it is the start of a seizure pattern.  If Nick falls down, I don’t ask him first if he is ok.  I ask him if that was a seizure.  If he says no, then I ask if he is ok.  If he says yes, we start the dance again.

Arden told me that he thought I needed to share some of the difficult things and not only the uplifting things about taking care of Nick.  I am interested in hearing your comments, just be gentle.  I feel vulnerable and a little raw.

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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.