63,000 words
Well, friends, I finished the first draft of my book last week: 63,000 words that ensure that Adelaide will live forever. When I first started thinking about the book, I thought it was going to be about Adelaide, her life, loss and lessons but what ended up coming out what my own journey and how her lessons, her losses, forever changed the course of my life. Initially I felt selfish writing about myself in this way, but as one friend told me: Adelaide was the hurricane, the impetus for the chaos and forged bonds, but the story that people will connect to and learn from, is how hurricane Adelaide affected all those with whom she came into contact, especially me.
Over the last few months I’ve enjoyed escaping to my office/Adelaide’s room and living amongst my memories in a world where she’s still with me. Where I can lay with her in her bed, listening to the oxygen concentrator, running my fingers through her hair. Where I can sit on the Lake Michigan beach and see the peace of her surroundings wash over her the same way they do to me. I’ve reread old blogs and been reminded that there were times when all she wanted was me and would cry when I left her, something I’d forgotten about since her passing. I’ve also had to relive the scarier moments, watching her code, watching her seize, and the accompanying helplessness felt daily. The hardest part though, was writing the ending of the book, because aside from extensive edits, I no longer get to live in a world, albeit in memories alone, where she is with me. God, I miss her!
It’s important to me to emphasize that this book isn’t about grieving her loss - I’ll save that for book two ;) No, this book is about the nearly four years we had with her and the roller coaster of emotions we experienced as Miguel’s career skyrocketed and Adelaide’s condition deteriorated. It’s about how in the same week, Miguel was cast as Hamilton and Adelaide was diagnosed with epilepsy. The following cross-country move, medical odyssey and the abrupt end to my career which, inevitably, resulted in the loss of my identity.
Once upon a time, I had been our family’s primary breadwinner. I had been the one with the exciting events to attend, bringing home the paychecks that paid our mortgage. But now my days were spent balancing Miguel’s opening nights and black-tie events with Adelaide’s terrifying seizures and emergency room visits. Literally, overnight, my life was unrecognizable, an unfamiliar mix of carefully measured syringes and press photos in ballgowns.
Inchstones, (because what else was I going to name it?) details how these two paths, my husband’s stardom and my daughter’s incurable condition, collided with me in the middle. It is my journey from a lost mother in denial, rationalizing each milestone Adelaide missed, to a woman finding her place as a leader within the special needs community and owning her powerful voice. One step, one day, one inchstone at a time, my warrior daughter became my teacher, my adventure, my purpose. Through our shared journey, Adelaide showed me how to accept weakness and find strength I never knew I had. How to smile through tears because life is complicated and emotions are contradictory - but that doesn’t make them false.
As much as I have Adelaide to thank for these lessons, I have to thank all of you as well. For reading this blog, helping me process my emotions and relating to my journey. For reminding me that I’m just not that special, whether it is as a special needs parent or as a woman trying to find her place in a world that insists on viewing her strictly based on her relationship to others. I am so proud to be Miguel’s wife and Adelaide’s mom, but you know what? I am also so much more than that. We are all so much more than these titles.
Now, I just need to find someone willing to take a chance on me and Inchstones. The first draft is done, the proposal is ready to go, the query letters have been sent out. I’ve always dreamt big and that’s not changing anytime soon. So, I’m putting it out into the world - I’m ready to take this next step and teach the world what the special needs community already knows: find your inchstones and celebrate them because milestones aren’t guaranteed and let’s be honest, they’re overrated anyway.
Love you all and wishing you the gentlest of holidays…
Kelly
