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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 escalating seizure episodes every few months this past year. We have tried many therapies over his 43 years of experiencing seizures. We are grateful that ongoing research has developed new ideas and new drugs to help combat his illness. We trust Nick’s team of doctors to continually gain knowledge and experience treating patients with LGS like Nick. They truly do care about him and his quality of life. Ultimately, Arden and I as his parents and as his legal guardians are called upon to make these decisions about his treatments.

If we are lucky, we have experts or mentors that we can call on to help make the choice. At least they can help educate us so we are not choosing blindly. We can reach out to others who are walking the same journey we are, to discover their experiences. However, the decision sits squarely on our shoulders.

Nicks’s care team suggested that we add a new drug to the other six seizure meds he takes daily. We researched the available information online, learning about both the benefits and the side effects. We asked our peers, we chatted with the doctors. We prayed. We pondered.  We talked to Nick about what he wanted to do. We read some more.

In those moments today, I wished that there was someone else who would decide for us. Someone who knew all the answers, someone who would sweep in, like a superhero, cape and all, and tell us what we should do.

There wasn’t anyone else.

This afternoon, we decided to start a trial by adding the new drug. Is it the right decision for Nick? We don’t know. We believe so, but we may never know for sure. As Nick ages and his epilepsy progresses, we don’t always know what the triggers are that will bring on the next episode.

So for today, this is what we have decided. We will monitor Nick carefully as we always do. We will try and eradicate our fear and replace it with hope and faith. And yet, if I am honest, I still wish there was someone else who would tell me what the exact best decision would be.

Please reach out to me and let me know if you can relate to this story. It can be an incredible blessing to hear the stories of others. Please share this blog post if you know someone who would benefit.

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One Comment

  1. I am praying for Nick and You and Arden. Decisions like this are hard to make, but we know that you make them with all your love and amazing knowledge!

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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.