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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
People do things because it makes sense to them. We may not understand their perspective because we haven’t had the same life experiences. If we honestly make an effort, we may discover and learn something new. I have a few friends who have different perspective and ideas than I do. For some it is religion,
Just like most everyone I know, my calendar of scheduled appointments gets filled up. Not all of these appointments are work related, some are lunches or dinners with friends. Some of my appointments are self-care and pampering as well. My days are busy. Until something happens with Nick. Then everything changes in a moment. My
In the early 1980’s there was a dessert place in Seattle, that had the marketing slogan, “Eat Dessert First, Life Is Uncertain!” Arden and I adopted this as a family motto. Circumstances always remind us that life is uncertain. It is important to find enjoyment in life and don’t put off things that you want
Over the years, Arden and I have tried to discover things that will make caring for Nick easier both for us as well as easier for him. Some ideas have worked out and others we have scrapped. Sometimes we are brainstorming and planning for awhile and other times, the light turns on and a solution
Nick loves meeting new people. Often he will put out his hand as he says, “Hello.” If they respond to him, he follows up with, “What is your name?” Some people will engage with him and others seem affronted by his attempt to talk to them. On Monday, I decided to follow his example. Traveling
I wanted to share this story not only because I think that it is a very cute story about Nick, but also because I believe that wisdom and support can often come to us from unexpected sources if we are open to receiving it. The other day, Nick’s younger brother Derek and I were discussing
Today was a rough one. Nick was sick. It might turn out that he just has a cold, but that is the problem, we never know. He kept sneezing. I think that if I was watching our day today on a TV show, I might even think it was funny. It could be considered slap-stick
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In the first few weeks after he was born, Nick just didn’t seem to completely wake up. He was never fully alert. He wasn’t comforted by anything; food, warmth, human touch, nothing seemed to stop him from crying. It wasn’t a loud cry. Just a constant one. In frustration, after what seemed like hours of
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.
