The Party is Over, but the Memory Remains!
We celebrated Nick’s 42nd
I was talking to another mom yesterday as she related to me a story that I knew well. Her adult daughter had started seizing the day before, over 20 Grand mal seizures in a 2 hour period. The mom wasn’t able to get the prescribed rescue meds into her daughter between the seizures. That was the part that was terrifying. She had to call the ambulance for transportation to the hospital where they could administer the needed medication. After a few hours, they were able to go home. When the daughter awoke in the night with more seizure, the mom was able to administer the medication so the crisis was averted.
As she was relating her story, I discovered that I was holding my breath and felt sick to my stomach. It was as if I had been standing there with her going through the experience.
In those minutes, each second seems to last a lifetime. As your child is seizing uncontrollably and all you can do is get them to the floor, turn them on their side, clear the surrounding area and the wait until it’s over. Frantically watching the clock to make sure that it doesn’t go ‘too long.’ In my opinion any seizure of any length is too long. Even after 37 years of caring for Nick through seizures, I don’t ever feel prepared and it is never easy.
The picture I included today was taken after a particularly long seizure series. Nick was asleep as is his usual pattern when the seizures finally stop and his sister Karen crawled into his bed behind him, exhausted emotionally and physically from the ordeal.
Unexpected and random, it often feel like a sucker punch to the gut when these situations happen. I am grateful for the emotional and physical support that we have received from our family and friends. I hope that I am able to give support to others when they need it.
Please share with me when you have been blessed by others during your darkest times. I believe that is an incredible blessing to hear the stories of others
If you know someone who would benefit form this blog, or the book when it comes out, please share this with them.
We celebrated Nick’s 42nd
The holidays can be
The other morning Nick
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.
It’s a tricky song that I used to love but now have mixed feelings about. Coulter regrets not dealing with his sons DS better now. He is clearly describing his own experience after a few months of his sons life.
However, my daughter has Down Syndrome and I don’t recognise the portrayal here at all. No ’empty eyes’, no ‘not recognising the face’ and no ‘surrounded by despair’. She is the brightest, happiest girl surrounded by friends and joy.
That’s what makes it problematic. as an individual experience, we cannot argue with it. But it does a disservice insofar as it perpetuates a very stereotypical view of people with DS and sets the expectancy that their birth is a source of great suffering for parents and children. when in reality many parents of children with DS will report that they become a source of great joy in our lives.
I do understand your comments. One of my main goals in hosting my blog and writing my book is to help others recognize and feel the joy that we feel, and it is important to realize that Phil is being vulnerable about his initial feelings about his son. I have heard him speak concerning his love for his son and feelings of loss and grief at his passing. In addition, the care and kindness that he has shown my son demonstrates his feelings. Just as I don’t want people to hide their children with special needs away from society, as many parents did for generations, I also hope that parents and family members can feel that it is perfectly okay to share their emotions openly, even those that some might think are negative. I welcome the open discussion, thank you for commenting.
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