I’m Glad You are Still Here (A Farewell to Style)

My dear friends,

One year ago, when I re-launched and re-organized this web space, I quite honestly had no idea what I was doing or why. All I knew was that I wanted to continue to connect with you and invite you into our day-to-day life with epilepsy, Aicardi syndrome and medical complexities. I knew I wanted to make new friends too, people who may or may not be walking an unexpected path. I created public Facebook and Instagram pages. And, I continued to write.

As I look back to the end of 2017 and I re-read, “I’m Glad you Are Here!” I have to smile. I sound incredibly enthusiastic, driven and ready to take on the world. And like any aspiring blogger, I sound relevant, polished and committed to producing useful resources for my readers. It almost sounds like, I may be writing from a cafe in France — or at least from a coastal coffee shop over a latte with heart shaped foam.

And, like any aspiring latte-sipping-lifestyle blogger, I even had a profile picture of me staring off toward the horizon over the Pacific Ocean, hair blowing in the wind. I’m wearing an off the shoulder dress that certainly did not, and may never, align with my evolving lifestyle.

One of my blog categories was even called “STYLE.” Because like many of you, I like to get dressed up, to feel my best, and look my best. If you have been following the blog over the last year or so, you know about my resolution to wear more lipstick like my grandma Barb did, and you know a simple pair of nude colored block heels can help me feel more like myself when my world is tilting: my polished self.

I thought I was going to continue to cultivate this polished version of myself in this space, all breezy, and light, and put together and balanced. That’s not what happened.

Over the last year, as I sat down to produce something useful, something stylish and possibly worth sharing with God, the universe and the social internet, my “STYLE”-self stepped aside to make room for my soul-self. It’s my soul- self that picks up a pen and puts it to paper, as form of prayer, and as a testament to hope and love. Recently, this quiet corner of the internet, where I share stories about my family’s day-to-day-life, has become a place where I have intentionally chosen not to rally my “STYLE” self. Instead, I

1. Rant and rave at God, the universe and good bow-tie wearing people in parking lots. “Wonder Woman”
2. Declare friendship with loneliness. “My Lonely”
3. Describe my obsessive internal relationship with intrusive, anxiety-producing medical memories and images + express feelings of helplessness and vulnerability. “The Mother Who Found Her Voice”
4. Visit with my Grandfather (who went to heaven in 2015.) “Stardust and NASA Stickers”
5. Eat cat food and befriend a “horrifying” fiberglass statue of Ronald McDonald. “The Woman Who Ate Cat Food on Christmas Eve”

And, you know what amazes me? Polished or unpolished, you continue to graciously journey with me and my family on this unexpected path. We are so thankful for you.

You might have noticed I threw out the category “STYLE” last month. And I’m learning it’s sometimes okay not know exactly what I am doing. Sometimes it’s okay to let things, especially soul things, grow and blossom in their own time. Especially when I already know the important things; I know I love the horizon and the Pacific Ocean. I know I love the way sea breeze rustles my hair and reminds me that “unpolished” is beautiful. I know I still love to wear dresses (and shoes) that do not fit my lifestyle. And, I know I need healing. Soul healing. God- given healing. And I know without a question, for me, this type of healing involves writing. And this type of healing has, and will continue to involve you.

You who read. You who encourage. You who pray. You who embrace me and my family. You continue to motivate me to write about this messy, bright, day-to-day-life through every comment, direct message (I read and save every single one), social media share (all of which I find incredibly humbling), email, text or phone call.

Everything I post, these polished or unpolished stories and photos, are an invitation to our day-to-day-life and an extension of friendship. A place where you and I can come just as we are: unpolished, imperfect humans, seeking to hold fast to faith, love, hope, joy, and wonder.

I am glad you are (still) here.

With love and gratitude,

Jesse Van Leeuwen

Photo Credit: Jessica Rice Photography