The Quiet Wheels

It wasn’t exactly my plan to take two weeks away from the blog, but perhaps I needed the break. November was a lot, and it wasn’t helpful coming off a busy and emotional October which included Adelaide’s birth and death days. So, I’m trying to start December with a more simplified focus on home and family. With the holidays coming up there isn’t much time to focus on much else anyway. Career responsibilities are still there, emails to be responded to, meetings to schedule or attend, but for this month I’m deprioritizing my usual hustle to book more, write more, attend more, do more. For now.

I wish I could say that this (temporary) shift is self-motivated, but I am about as likely to let off the gas as a crash test dummy heading for a brick wall. Set off by the election initially, this need for a reallocation of energy came into focus when Miguel and I were in LA two weeks ago.

It was an inspiring weekend: We spoke/performed at the EndWell Conference which works to normalize conversations around death, dying and grief and I spoke on a panel and sold out of books (!!!) at the Grieftastic Book Fair the following day. It was incredible connecting, networking and sharing space with likeminded writers, advocates and clinicians that I admire. A true career highlight that I was beyond honored to be a part of in such a meaningful way.

And then smack in the middle of the two events, Miguel and I attended a showing of musical call “It’s All Your Fault Tyler Price” about a family whose 13 year old daughter has epilepsy, LGS to be exact (IYKYK). The show is told mostly from her 11 year old brother, Jackson’s point of view as he struggles with feeling forgotten and ill-informed. While our family’s story is not identical, the similarities (beyond the brother’s name) were a gut punch. To the extent that several scenes felt like someone had been spying on us.

In the days that followed, Miguel and I would keep coming back to the show and how Adelaide’s life and death have shaped Jackson’s life. There are all the good things of course: he is empathetic, patient, and (usually) prioritizes kindness. I told Jackson about the show and asked him if he remembers feeling second to Adelaide.

“Yeah.” He replied with an unmistakable edge to his voice.

“Do you want to talk about it?” I asked.

“Nope.” He said, looking away and ending the conversation.

To be fair Jackson is 12. A majority of our conversations include one-word answers on his part. But I suddenly became aware of all the ways Jackson still likely felt forgotten. He may have lost one demanding sister, but then he got another. Anessa doesn’t require nearly as much of my attention as Adelaide did, but she still has an undeniably demanding presence. Also no child has a traumatic start to life and then is magically ok because she is adopted by a family that loves her. Love alone does not heal trauma. It also takes trust, honesty, and interventions. All of which also take time. Time away from Jackson.

When Jackson recently brought home an exam that he had done poorly on, Miguel and I asked him why he hadn’t asked for help from his teacher or us. Part of the answer is that he is now at a stage of school where he has to learn how to study. But I also began to wonder if his place in our family might have had something to do with his unwillingness, or perhaps an unknowingness, to self-advocate.

He has typically gotten good grades, stayed out of trouble, and done what we’ve asked him to do (after the 2nd or 3rd request, of course). Like many boys his age he would be perfectly content playing video games and watching YouTube all day – if we let him. He has good friends who he makes plans with and is just generally an easy-going kid. Not a squeaky wheel to be found.

And I’m left wondering if that’s because, between his two sisters, he thinks we would even be able to hear one if it was there. Even now my work revolves around talking about Adelaide, her life, my grief at her loss. I sit on two non-profit boards that are tied to her. Does he clock that? Feel it?

I’m not sure.

My career is incredibly important to me and that won’t change anytime soon. But it can’t come at the expense of my family - and other family member’s needs cannot come at Jackson’s expense. I have been reminded that the challenges of having a medically-complex and disabled sibling do not end with the siblings passing. Moving forward I will be taking more time and listening more closely to Jackson’s needs. I plan to work harder to honor the few requests he makes and to be more available for those rare moments his answers are more than one word.

Anessa is my sunshine, Adelaide my North Star, but Jackson, is forever and always my lighthouse, guiding me back to what matters most.

*Shared with Jackson’s permission*

ID: 12yo Jackson is wearing a black, yellow and white baseball uniform and smiling at the camera. Kelly is leaning into Jackson while wearing a pale blue t-shirt with denim overalls, her sunglasses are on top of her head and she is also smiling. Kelly is a sunflower that has a tiny ladybug on it as they stand in front of a sunflower field with clear blue skies behind them.