Goals & gratitude

This is my “bring it on” face  Photo credit: Lori Sapio Photography, July 2019

This is my “bring it on” face

Photo credit: Lori Sapio Photography, July 2019

51 blog posts later and “Inchstones” is officially one year old. I know, right? I figured I would have content to get through about six months of weekly posts then I’d start to struggle but apparently I have a lot to say… I can already hear my family chorusing a sentiment of “no sh*t, Sherlock”.  The feedback and encouragement I have received from everyone who has followed along has meant so much to me. Even with a solid community around me this special needs parenting and advocacy journey can be lonely and isolating. But when I’m writing I know that my feelings and our experiences are not unique. There are thousands of others walking a similar path and that is what gives me the courage to share. Of course, the confirmation from readers doesn’t hurt when I need a little extra help quelling some of my more irrational moments of weakness. 

Writing this blog, sharing our life and building this community has taught me so much. For example, you never know who is reading so when you declare multiple times that you sneak wine into the hospital don’t be surprised when one of your regular hospital nurses asks you what kind you brought with you this time… yeah, that happened. But also, I wasn’t expecting the outpouring of support and understanding from parents of typical children. In reading their comments and talking with these friends I’ve realized that we all have similar fears and insecurities. Sure, the special needs parents’ concerns are on steroids, (sometimes quite literally) but at the end of the day it only takes a conversation and some empathy to build a bridge and create understanding.

Diving into the epilepsy and greater special needs community, building these bridges of awareness and, of course, fundraising has ignited a drive within me that was just waiting for the right fuel. You all are it. Which is why I am SUPER excited to announce that I have started writing a book! I’m nearly three chapters in with an outline and about ready to reach out to literary agents or publishers so if anyone has connections I am all ears. The book will follow our journey with Adelaide and all the lessons we’ve learned along the way. It will be similar in feel to the blog and inevitably draw from it but will dive deeper into our history, the lessons learned and, if possible, our emotions around it all.

The blank page from my perch in Michigan just before I started writing the book July 2019

The blank page from my perch in Michigan just before I started writing the book July 2019

I have big dreams people, I want to make a difference in our community, to raise awareness and be a mighty advocate. It started with a blog and a podcast but I’m ready to turn it into a best-selling book and then a public speaking tour so that we can bring a heightened level of understanding to all our communities. Unfortunately, society won’t know how to treat our children and families unless we tell them, so let’s tell them. They don’t know how desperate we are for research dollars for treatments, and more importantly, cures, so let’s tell them. Perhaps this is all rather presumptuous of me but I figure it is a lot harder to accomplish goals being modest and soft spoken. Look, I know I’m not a trailblazer here. I’m not the first, last or only and thank goodness for that. Could you imagine the pressure! But gosh, am I passionate, driven and oh so stubborn.

This will all take time as nothing in my life moves as quickly as I wish it could. In between hospital visits and doctors appointments, Jackson’s activities and Miguel’s events, I’ve been sneaking in meetings and time to write. To be clear, none of this is possible without our nursing support. Without Adelaide’s Army I wouldn’t be capable of showering on a regular basis let alone advocating across multiple mediums. But this week, the stars aligned and I was able to attend an advisory board meeting for patient advocates. While there I shared experiences on the given topic, both personal and those that have been shared with me through this blog or on social media (all kept anonymous of course). In front of major industry players I was able to represent our families’ concerns and interests. It was so rewarding. When Miguel texted me asking how it went I responded with “I want to do more of that”. One of the coolest parts of the day? Next to my name on my ID badge it read: Inchstones by KC, Owner. Damn straight.

Cuddles with my Adelaidey baby, August 2019

Cuddles with my Adelaidey baby, August 2019

Why make these announcements now? Well, in part, I need all of you to hold me accountable, to help me keep this momentum going. Even the most stubborn can see their dreams fall away due to the overwhelming stress of life. I figure that if I put my goals out into the world then there is that much more positive pressure to achieve them. Please keep letting me know when something I’ve written rings true to you and, even more so, let me know if it doesn’t. Is there something you’re experiencing that I can help put words to that I haven’t touched on yet? A topic you’d like to learn more about or wish I’d cover. My email, comments and DM’s are open for business and I look forward to hearing from you and connecting. Thank you again for your friendship and support. For someone who is usually pretty good with words I am having a hard time finding the right ones to articulate just how much you all mean to me. Of course, I must also note that none of this exists without Adelaide. I refuse to let her fight be in vain. An inchstone at a time sweet girl you will leave a legacy, I will make sure of that. So, with Adelaide ever-present on my mind and all of you in my heart I am fired up and ready to see where this path takes us. Let’s go!