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Sometimes I ask, is it worth it?

As a consequence of his Lennox Gastaut Syndrome, Nick’s mobility has decreased over time and he has experienced regression of many skills that he worked hard to master.  So of course, because of this regression, his personal care needs have increased and sometimes it is hard work for us to do everything for him, especially when we are traveling.

We try to plan excursions and outings that are accessible and that he hopefully will enjoy.  Often he won’t say anything about the activities we are doing, and that leaves us guessing as to whether he is having a good time or not.  In addition, he often seems anxious to us because of his repetitive behavior and speech patterns.  He repeats the same questions over and over, even when we have answered him over and over.

We are currently spending two weeks on Maui, just the three of us.  Our pace is slower this trip than when we have traveled here with others.  We have discovered that Nick likes sitting at the open door to the balcony overlooking the pool, watching everything.  There is a waterfall just outside of our balcony so the sound is soothing and he loves watching the water cascading down into the pool.  The people in the swimming pool also catch his attention and he sometimes talks about what they are doing.

We are always walking a fine line between keeping him interested and engaged in what is going on while trying to make sure he avoids getting over stimulated and over tired which could bring on seizures.  This slower pace is more relaxing for Arden and me, but I wonder if it is a bit more boring for Nick.  He doesn’t verbally tell us that he is bored, but sometimes we think we can tell.  Then he just might surprise us and tell us that he loved it when we thought he wasn’t interested.

A friend recently reminded me that typically all parents are trying to make sure that their kids are happy.  It just can be a bit more of a challenge when the child can’t easily express their feelings and emotions.

Often Nick seems to be just sitting there is his wheelchair, not paying attention.  Then when I least expect it, sometimes hours or days later, he says something like, “Thank you take me on that boat.” or “I love that tree.  You love that tree Mom?  His smile melts my heart and again I do know that it is all worth it.  We will keep traveling with him because he loves it.

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  1. You have given him so much joy and fullness in his life in so very many ways, including all the traveling. You can hardly know how very much it has all meant to him.

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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.