Once again, Hell week is upon me: the anniversary of Adelaide’s passing on the 12th followed by her birthday on the 17th. This year these dates are hitting a little different as I find myself in, dare I say, a happier and more balanced place in my life. In order to reconcile where I am with where I’ve been I am learning to relinquish and reclaim. Oh, and to make space for grace because this shit is hard.
In honor of CURE Epilepsy’s virtual event, “Unite to CURE Epilepsy” I wanted to share a personal story from our epilepsy community. Tracy Molnar responded to my call for guest blogger submissions, and I am thrilled to share her experience with her daughter, Lemon. Her vulnerable essay is a sincere reminder of what we are fighting for and how important this community is to each other.
I’m always eager for the opportunity to catch up with Chicago friends, so when Wendy told me she was speaking at the Forbes Power Women's Summit in NYC, naturally I invited myself along. I was excited to see Wendy, and at such a star-studded event, though what I took from the day is not what I expected:
1. I am super glad my book doesn’t come out for another year.
2. I have a crush on Bobbi Brown
Sometimes life takes a massive dump right where you are walking and you either step right in the middle of it or somehow manage to skirt it at the last second. Sometimes you can see the steaming pile in front of you a mile away but the guard rails are up and there is no exit ramp in sight. But sometimes – sometimes – the worst doesn’t happen. Sometimes, a collection of moments turns out ok. Maybe even better than ok, maybe they are even beautiful.
My brother is getting married this weekend!!! I am so freaking excited and cannot wait for the celebration to kick-off. However, it dawned on me this week that I had been pushing down some difficult and contradictory emotions that will inevitably rise to the surface. I am walking into another major family event without Adelaide and even though Strawbaby will be a flower girl, Adelaide will not. Somehow, I need to reconcile all of this because I want to make sure this weekend is about my brother and his beautiful bride… not my grief.
This weekend, Miguel and I had the honor of attending The Nora Project’s annual gala and it was altogether perspective-changing. I think a lot of us get on our soapbox of choice and talk about disability and inclusion but often fall short of fully executing… myself included. On Sunday evening, I was able to see what a truly inclusive event can look like. Which got me thinking (not for the first time) about the emotional toll our exclusive society can take on those with disabilities.
…And that’s when Linda Beresford’s email entered my inbox.
Four years ago, August 2018, I posted my first blog on InchstonesByKC.com. I realized this week that is longer than Adelaide was alive. Proof, I guess, of the power of legacy… or at least that’s what I’m going with because I’m not ready to dive into that wormhole yet. ANYWAY, 186 blogs later, I’m still going strong. When I started, I had all these thoughts swimming around in my head and it was getting loud and crowded and hot in there. Like when you’re at a concert or a bar and you just need to step outside for fresh air. That, for me, was the blog: a place where I could air out my sweaty brain mush.
This week I visited a friend and her two daughters, one of whom was adopted just five months ago. When she set her phone down I couldn’t help but notice the lock screen on her phone was a picture of her children. Which seems pretty natural, right? I mean most parents have pictures of their kids on their lock screen - as do I - the difference is that mine is still of Jackson and Adelaide, not Jackson and Strawbaby. It didn’t really strike me as a big deal until recently when I’ve begun to acknowledge and accept that my family looks different now.
There are certain locations that we visit sparingly, maybe once or twice a year, through which we can mark time. Locations where specific memories are made year after year as opposed to the never-ending stream that occurs closer to home. My parents home is one of those places for me and especially their neighborhood pool.
This week I battled some major mind-screwiness to finally find Adelaide - she's been with us all along.
And then it was August. Even though it is still 90 degrees outside and my kids don’t go back to school until after Labor Day, I can feel autumn and all its changes right around the corner. As long as there are school-aged children living in my home, the start of a fresh school year will continue to feel more like a new beginning than January 1st ever will. A new school year mandates change to the routine of our lives in the way a traditional new year can only do arbitrarily.
This week has been wild. I started ini Fayetteville, Arkansas and am currently wrapping up a couple days of CURE business in Chicago. It hasn’t been entirely smooth but I’ve rolled with it. I’ve even leaned into which is so not like me. Is that growth I’m feeling? And also, whose life am I leading because I’ve only dreamed of this life - is it actually coming to fruition after all these years?
I surrendered control for this trip in a way I haven’t done in years. That I didn’t know what to expect is, at best, an understatement. By the time I stepped into my room with the summer Italian sun blazing in the window, luggage at my feet, and jet-lagged after a 16-hour journey I began to question what in the hell I had gotten myself into. Who had I just surrendered to and what exactly was I surrendering for? Over the next four days, I learned that the answers to these questions were as complex and varied as grief as itself.
