Today, I shared this on Jordan's Instagram page @Jordan.lees_journey and I wanted to share this with all of you as well.

June marked four years of epilepsy. July marks four years of a confirmed Developmental and Epileptic Encephalopathy (DEE). 

I thought July 15th was our DEE DDay (diagnosis day), but it’s not. That’s the 14th. The 15th is the day after; the day Chris reminded me we have to live our lives, the day I didn’t cancel our beach plans. It’s the day I decided I didn’t want  grief, or fear, or epilepsy to take anymore from us than we could control. The 15th is the day in my memory I’ve held onto and I want to honor everything this day symbolizes. 

I think back on the early days and how difficult they were and I think of my former self. If she could have seen a glimpse into the future she’d see that epilepsy is still part of our daily life - but we’re okay. She’d see how hard it is to navigate a systems and a society not designed for people with disabilities, but she’d see us navigating it and figuring it out along side an amazing community of family and friends. She’d understand that grief will be part of the journey in different ways, at different times, most likely forever. But she’d also see that it adds to the richness of life, bringing valuable perspective about what matters most and appreciation for life’s seemingly little things that may have otherwise been overlooked. Most importantly she’d she her happy, vibrant little girl still radiating joy everywhere she goes. I think my former self would breathe a sigh of relief.

Four years. I’m proud of how far we’ve come. I’m grateful for our life, the good, the hard, and everything in between. 

Thank you for all the love and support! ❤️