I live in Los Angeles, where I write and blog under the California sun.
How do you come to terms with your child having an incurable illness?
This week Lindsay Bryant Jesteadt talks about her young son Noah, his journey with narcolepsy and the impact his condition has has on the family.
You'll want to read this...
There was a time when I thought Mathilda would never be well enough to attend school. In fact, learning was so low down on the list (back when our lives were dominated by hospital admissions and appointments) that I resorted solely to books on tape with the hope that some of the dialogue might, just might, get through to her asleep there on the couch.
Seven years later however, Mathilda is in 6th grade a small Catholic school in the greater L.A area. She is able to attend every day because of a very specific medical regime, punctual and consistent sleep hygiene (naps), kind-hearted peers, and super supportive teachers . . .
I remember May 24th 2010 well. It was the day a doctor from India told me my 3-year old daughter had narcolepsy.
After 6 months of failed hospital visits and invasive tests to rule out a brain tumor, epilepsy, and-- wait for it--drug abuse, I felt incredibly relieved. That relief was was centered around the the thought "it could be worse. It could be so much worse."
All I can say about this review is that when I grow up, I want to be an investigative journalist.
With grateful thanks to Celeste McGovern for her thorough synopsis of Waking Mathilda.
Yesterday I found out that Waking Mathilda won the Silver Medal for Non-Fiction/ Memoir in the 2017 Readers Favorite Book Awards.
It was one of those funny moments when you think twice about answering your cell because you don't recognize the number and you've heard about a "free" cruise to Alaska many times.
I'm a big believer in advocating for our children who live with chronic illness but there comes a point when we need to let them speak for themselves.
Just recently I was challenged to think more about his through the Youth Ambassador Program that's organized by Narcolepsy Network. Essentially it's about our children being empowered to self-advcoacy, and the benefits are huge.
In January 2010, 3-year-old Mathilda Crisp received the H1N1 vaccine in her home country of England. Within weeks, she began to display a bizarre plethora of neurological symptoms that left doctors baffled and her parents distraught. Mathilda began to “hallucinate” at night and suffer with unrelenting sleep attacks during the day.
https://goinswriter.com
http://halelrod.com
The last two weeks have been super fun working with Nada Jones in her quest to inspire other women to realize their dreams. I was honored to be on a panel in Santa Monica at WeWork where a cosy room of entrepreneurs heard my story of writing Waking Mathilda--A Memoir Of Childhood Narcolepsy.
Back in the summer of 2011, we moved from England to the USA for two reasons. One was to seek expert care for Mathilda at the Centre for Narcolepsy Research at Stanford. The other was to get her treatment.
