Earlier this year, I received an email from our representative at the Undiagnosed Diseases Network. They had finally received and analyzed the results from the genome testing done on Adelaide’s donated brain. The emotions that ensued took me on an unexpected ride leaving me yearning for the peace I had hoped would come with a diagnosis.
I am in the weeds of hell week (Adelaide’s death day 10/12 and her birthday 10/17) and surviving. I learn something new each year about how to best muster through, but at the end of the day, these anniversaries just suck. So, since my thoughts are never far from Adelaide right now anyway, I’ve decided to lean in and share her origin story of sorts – or at least the origin of her name and nickname - I’m assuming you all know where babies come from at this point.
I am about to cross a threshold I have been dreading since Adelaide passed: we will have been without her longer than we were with her. I have been trying to make sense of this inconceivable passage of time and the idea that I have been missing her longer than I was given to hold her. How does that make sense? And what even is time?
Nearly two years ago, as I was desperately looking for a literary agent to represent me, I wrote “IT WILL HAPPEN” on a piece of paper and hung it above my desk. Well, now it is finally happening and I am absolutely celebrating. But this time of year, leading up to Adelaide’s deathiversary, also has me remembering. One does not exist without the other and it is a delicate emotional balancing act as I hold both in my heart.
It doesn’t matter whether my schedule is packed or not, when I take time for myself: watching TV, reading a book, or taking a nap, I inevitably feel guilty. The to-do list is long and it is not going to take care of itself. #AmIRight? But then I made a remarkable, yet simple discovery about my to-do list which allowed me to change the way I think about my guilty pleasures.
Over the course of our lives, we gain (earn?) membership to various experiential clubs: the epilepsy club, for example. We don’t really want to be members, but that’s not taken into consideration at initiation. The shittiest club I’ve gained exclusive access to in my life is The Dead Kids Club. Now, you may think that the DKC sounds abrasive and dark, that it makes non-members a little uncomfortable which, if I’m honest, is kind of funny and kind of the point. Because sometimes we need a little dark humor to keep on, keeping on.
With Labor Day passed and school started, 96-degree temps aside, I do believe that fall is upon us. The end of this year looms large for our family as we stare down more change than our family has seen since, well, Adelaide died, COVID shut down the world and we left Chicago for New Jersey. Major life changes seem to hit our family every 3-5 years, so I guess we were due - at least this one doesn’t require a cross-country move.
With still two weeks until the start of school, the kids and I headed to my parent’s house in North Carolina this week for some extended beach and pool time. Even though I didn’t grow up in this house, (my parents retired here ten years ago) it’s hard not to feel reminiscent. Which got me thinking about a blog post I wrote in July 2021, less than two years after Adelaide’s passing: Lost in the Hads.
After years of meetings, calls, paperwork, home studies, filings, and court appearances, Strawbaby is officially, legally, and ceremoniously a part of our family in every way that she has been since the day we met. Because our court date had been postponed numerous times for a variety of reasons, it wasn’t until a couple of days before our ultimate date that the magnitude of what was about to happen fully hit me.
I’ve dedicated more than one blog to extolling the virtues of siblings of kids with disabilities: empathy in spades, adaptability, and kindness for all, to name a few. This weekend, when dropping Jackson off for camp, I discovered another to add to the list. Now, at the time Jackson was developing this particular superpower, I was fairly certain I was damaging him for life. Turns out that could not be further from the truth.
Grace is my middle name, literally. While I’ve owned and loved the name, I’ve never truly felt like I embodied the word. “Simple elegance or refinement of movement”? Not here! This week I dive into my relationship with my middle name, which I share with Adelaide, dig through my memories of my Mimi for whom I was named after, and redefine what grace means to me.
What constitutes a full life and who is in charge of determining what qualifies? These were just a few of the questions I was left pondering after attending Stephen Jenkinson and Gregory Hoskins, "Nights of Grief and Mystery". I had no idea what to expect walking in and was forever changed walking out.
