Soooo I am writing a book. Yep. I said it. I put it out there to God, the universe and Lorelei. And now you. I’m pushing myself to complete this book by July 7, 2023. It will be the anniversary of Lorelei gaining her wings and crossing over to heaven. I think it would be amazing if I had this written and ready to be published by then…

As a way of pushing myself a bit more, I am going to start sharing (unedited) excerpts here. I need to be held accountable. I WANT to finish this project for her. For me. For my healing. So with that… how about I share a little piece of the intro with you?

Please keep in mind this is all just my first draft! Thank you for your kindness as I am terrified to put her story out there…

INTRO

The Princess Captain and her Mama

Once upon a time there was a young princess named Lorelei.  She had beautiful strawberry blonde hair, the heart of a warrior, and the nonchalant sense of humor that most comedians strive to achieve on the improv stage. She lived a life hidden in a tower away from most of the people who admired her but she had this mystical ability to radiate her love to them, no matter how far away they were. She lived a simple, yet enormous life full of color and adventures. She believed in magic, hope and light even though she spent most of her days simply fighting to survive.  

I suppose if I’m being honest, I should disclose that she was not a ‘real life’ princess like the ones you see at Disney World, because that would make me a queen and I am so far from that. I am more like a tired captain of the seas who has faced more storms in uncharted waters than she never expected to face. My old wooden ship is tattered, worn down and sagging like an almost-40 year old mama who spent too much time with a breast pump. My sails have holes in them that I have tried patching with duct tape. I’m surviving on rum and grief pie, something queens probably never eat and drink, or at the very least, they do not tell the world when they do. Basically I am a very exhausted pirate. Not a well put together queen. 

I am Lorelei’s mama. And as much as I want to believe that I ran this tight ship(wreck), she was really the Princess Captain in charge. I was privileged to be the one who acted as Lorelei’s voice in her journey with mitochondrial disease. She did not have words, so I wrote for her. She could not sit up, so she leaned on me. Not enough muscle tone to walk, you better believe I got a wee bit stronger making her voice heard and carrying her 42 pound body up and down the stairs. (Unfortunately I am still not skinny though courtesy of the aforementioned grief pie.) 

I will be your tour guide through this HOPE FULL book of lessons that Lorelei taught me in her five-ish short years on Earth. She is a soul and a spirit we should all learn from. One that would make this world a better place if we all practiced a fraction of her gumption and love. So grab a drink and a slice of key lime pie, and let’s do this. 

IT IS WHAT IT IS

This is… 

Not a sad story.  

Not a story of a terrible disease that killed my daughter and will eventually kill my son.

Not another fundraising attempt. 

Not a handbook of rules. 

Not a self help book.

Not how I expected my life to go. 

Not the way I wanted to learn about hope, love, God and the universe. 

Not something you should feel sorry about.

This is, however…

Light and love.

Believing in a higher power and a purpose of all-the-good-things. 

Something I would not change. 

Probably going to make you ponder a few things you want to change. 

This is part of my grief journey.

This is her eulogy and then some.  This book was written with words that are snarky and fresh… just a mere few months after Lorelei died.

This is a story of a little girl.  A little girl who had the odds stacked against her.  Who was nonverbal.  Who couldn’t walk, crawl or eat food with her mouth.  Who was the 31st documented case of FBXL4 Mitochondrial Disease in the world. 

This is a collection of lessons from a little girl who, despite her struggles, changed the world while radiating joy.

This is hope.

This is Lorelei.