My daughter, Jordan, is my hero in life and my greatest teacher! She is an inspiration to all those who know her. Jordan has been battling the cruelest form of epilepsy, Dravet Syndrome, since the tender age of six months, and in spite of 3 full years on a very restrictive diet and nearly ten different anti-seizure medications, the seizures continue to rob Jordan of a normal life 18 years later.
Like any teen girl, Jordan dreams of being an ice skater, a cheerleader, and a photographer. She is a people person and loves watching movies, going bowling, horseback riding, swimming, or to the art studio with her friends. She is a nature girl who loves animals, babies, and the fragile people of the world. Jordan has an incredible heart that seeks out the weak and wants to care for them. Some of the sweetest words ever spoken to me in my entire life have come from Jordan. She looks at life and lives life in such a pure way that you can’t help but leave her presence a better person.
At 18 years old, Jordan is 5’ 2” and weighs a mere 76 pounds. Even though she is tiny, Jordan is a great eater and calls herself, “the girl who loves new food!” Nearly every month, Jordan suffers from what appears to be Non Convulsive Status, NCS, or status obduntation. During these days, she is unable to eat, drink, or function much at all. Each time this happens, Jordan loses at least a pound.
Jordan had a really tough time of this in September, and I knew in my heart that her little body couldn’t withstand another episode, so within two weeks time, Jordan and I packed up half of our house, got all our papers in order, and ventured 22 hours from Cleveland to Colorado with her best buddy, her cockapoo, Tulip, with one goal– medical cannabis oil from the Realm of Caring.
A new chapter in Jordan’s life begins NOW, and this one is full of hope and promise! We are so thankful that God has placed us here on this journey, so thankful for the people He has placed alongside of us, and so thankful for the promise that He never leaves us! Eighteen years of being Jordan’s mom has taught me to always trust my gut, to rejoice in the small things and let go of expectations, to work hard for what I believe in, and to never give up HOPE! Life is a precious gift—choose joy!