A fate far worse than having an incurable, debilitating and life-threatening disease, is knowing that your child has one.
On June 6th, 2014, our nine-month-old baby girl Remy, had a seizure.
That seizure would shift the course of our lives in a way we never saw coming.
Remy was diagnosed with autism spectrum disorder and a rare type of epilepsy called PCDH19. In these past four years, she has had thousands of seizures, spent weeks in the hospital, regressed in all areas of development and has struggled with autistic meltdowns and behaviors every day of her life. To say it has been a tough road, would be an understatement. It’s been pure hell! It has also been a time of tremendous growth and more joy than I have ever known. Remy has touched more lives in her short four years, than most people ever will in a lifetime, and I get to be her mom!
It’s all in Your Perspective
“If you change the way you look at things, the things you look at change.” Wayne Dyer
Diamonds form at extremely high temperatures and immense pressure one hundred miles beneath the surface of the earth. They only reveal themselves to us through the process of volcanic eruptions that thrust them up in the sky, landing them in cooled volcanic material, called kimberlite.
Even though volcanoes can be catastrophic to everything in their path, they also bring forth the most precious gems on the planet. That is what the world of epilepsy and autism are. Volcanoes of destruction. Destroying dreams, challenging beliefs, threatening happiness and ruining every fantasy we ever had about parenthood. But when we wipe away the debris, we see that in our hands, lie the most beautiful gems of all. Our children. Our precious, unique, priceless diamonds that we have the honor and privilege to protect, love and cherish.
I hope that showing you a piece of our world, you will feel encouraged to grow and navigate the twists and turns of your own journeys.
Thank you for joining me on this road, and welcome to our story.