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Cherish the life we live.

Today in the car we were singing along to an ’80’s station on the radio.  Then Kool & the Gang’s hit song “Cherish,” came on.  Nick loves this song.  It was very moving to hear him singing along with the chorus,

“Cherish the love we have
We should cherish the life we live
Cherish the love
Cherish the life
Cherish the love
Cherish the love we have
For as long as we both shall live.”

The lyrics really spoke to my heart and I have thought a lot about them today.  It is often very hard to decide to cherish the life that we are living when we are facing difficult things.

I realized that making the decision to cherish the love and the life we live has made all the difference in my attitude and reaction to my life’s experiences.

I belong to a closed Facebook group of over 3,300 members for people and their families who are affected by Lennox Gastaut Syndrome, or LGS.  It is the syndrome that Nick has.  LGS is a form of severe epilepsy that begins in childhood. It is characterized by multiple types of seizures and intellectual disability. People with Lennox-Gastaut syndrome begin having frequent seizures in early childhood, usually between ages 3 and 5.  Caregiving for a loved one with this disease can be difficult and some of the posts on this page are often heartbreaking.

However, this afternoon I was following a thread on the LGS group page that was different.  Yesterday one of the other moms had asked members of the group to post pictures of our kids amazing smiles.  There were hundreds of pictures posted over the past couple of days.  Kids of all ages, every one of the pictures was so beautiful and inspiring.  Their smiles were contagious.  Nick and I spent over an hour looking at the pictures while I told him the persons name and other information that was posted by their parents.  I had posted a picture of him, so he saw that one but then he told me, “We need bof of us smiling Mom.”  So we took a picture and I posted it.  He was thrilled.  It is moments like this that I cherish.

Many of the parents expressed that they loved this thread on the page because of all of the kids smiling pictures.  They were very uplifting and really helped create a sense of community among everyone.  One mom wrote that she felt so supported and comforted, as she sat with her child in the hospital ICU battling the effects of this illness.

We do need to cherish the life we live.  Even the things that are hard to do, can bring sweet tender moments of joy.  Has this happened to  you?  I would love to hear about your experiences.

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2 Comments

  1. This is fabulous, Eva! In a world with so much sorrow, we need desperately to see smiles!

  2. I loved that thread. That was such a brilliant idea to do. Even though this diagnosis sucks, we can still see the joy in our warriors as they battle this unfortunate disease. It’s always nice to know we’re not alone.

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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.