Lucas Camilo

Dear loyal blog readers,

The Lucas blog feels like it is almost in relic state. Our kids keep growing, but you wouldn’t know it here! Lucas is writing his own stories – mostly fiction, but he is also starting to do some personal writing. When we started his writing blog (handsomeboywrites.org), he posted anything and everything he wrote – mostly the Raven Diaries. But he’s growing and branching out. Sometimes he writes sci-fi and fantasy. Sometimes he writes letters to his ventilator. Now, sometimes he posts and sometimes he keeps the writing for himself.

I have also been writing! And while Lucas is in my writing, I’m trying not to tell his story as much as tell mine (though, of course, our stories are closely intertwined, especially when I write about parenting and caregiving and advocacy.) I’m trying to find the stories and space to reflect on what we’ve been through, what we’ve learned, what we’re still going through and still learning. And then, hopefully, I’ll figure out, like Lucas, which parts of those stories I/we are ready to share.

A couple weeks ago my first essay was published, called My Whole Heart in an online publication called The Write Launch. The essay is about school and disability, about watching your child go out into a sometimes-hostile world, about living with the knowledge that it could be better but only rarely is. It is about wanting to make my love a protective force field that he can take out into the world, and the knowing that I don’t quite have that power. And it is about surrender, letting him be in this complicated world and seeing him do that so gracefully.

So I guess I can’t help but write about Lucas. I am consulting with him along the way (as much as he is willing to indulge me), doing my best to get his consent for me sharing our stories with a broader audience.

I share this piece here not so much because we need you to tell us we’re doing a great job (there was a time we needed that affirmation was like bread, and this blog was so important for that – if you were here then, thank you!) I’m writing now with the hope that these articles will be tools for change. Hopefully I’m asking all of us to pause and notice who we haven’t yet included. Or maybe I hope my writing will be like fairy dust for our imaginations, inspiring us to envision ways of being together — ways of providing care and access and accommodations – that are radically better for all of us.

Thank you for reading, for sharing, for your thoughts and feedback. I am so grateful for your community.