Howdy folks! A bit of house-keeping here. I will henceforth (until I die??) be sending out my monthly newsletters on the LAST Sunday of the month at 8:00AM EST. (just so you know what to expect from me). Clarity is kindness, as my wife loves to say. Also, this way, you can read it in church if the sermon is boring. (JK).
Shout out to Jake for getting Lizzie subscribed and taking advantage of the amazing, once-in-a-lifetime Starbucks promo offer from last month! (MAYbe we’ll make it a twice-in-a-lifetime offer…👀) Got some good stuff today. Thank you for following along. Thank you for being here.
📌 In This Edition…
- BIG TRISOMY NEWS: Culture is changing, y’all…
- A-Frame Studio Update: Plus a possibly new colloquialism??
- Writing Progress: Did I just find my book TITLE?!
- Book Talk: I won’t bore you with this every month, I promise…
- Next Month: A juicy book update for sure (no bluffing this time)…
✨ Unused Coffin
Some of you may recall the article I posted in February of 2025 titled, Choosing The ‘Life Narrative’ For My Daughter Living With Trisomy 18 (if you didn’t read it, you should lash yourself with wet noodles and go back and read it here now!) [Side note, that article will be coming out at the end of the year as the feature article for CMDA Today Maganize!] Here’s the intro blurb as a refresher:
Up until the last few years, Trisomy 13 and 18 have been among a few congenital syndromes that medical texts and experts deemed to be “incompatible with life.” It therefore has been a common practice for families and physicians facing this diagnosis to either choose abortions or to withhold certain medical interventions that would otherwise prove life-saving. Now, we know that more than anything, culture can influence these attitudes. Thus, we are in desperate need of shifting our culture out of the practice of believing the Death Narrative and choosing a path that promotes dignity, hope, and life that displays the works and glory of God (John 9:3).
And guess what? It’s happening, y’all! Culture is changing! Just last month, the American Academy of Pediatrics (AAP) released updated clinical guidelines for the care of children with Trisomy 13 and 18! You can read the whole 13 page report here! I’m not saying that the AAP read my blog and updated their clinical guidelines… but I’m also not NOT saying that that’s what happened!
The new guidelines mark a seismic shift in how children with Trisomy 13 and 18 are viewed and treated within the medical community. For the first time, the AAP now affirms that these conditions are not uniformly “lethal” (or “incompatible with life”), that life-sustaining treatment should never be denied on diagnosis alone (in contrast to the otherwise common way of thinking, “she needs heart surgery but she has trisomy 18 and is probably going to die soon anyways…”), and that shared decision-making—rooted in respect for family goals—is essential. Most importantly, the AAP calls for children with Trisomy 13 and 18 to receive equitable and individualized care. This is HUGE.
I was talking with a trisomy 18 dad at camp a few weeks ago who is now living in Birmingham. (When I say “Camp” I am referring to the camp for families with Trisomy 13 and 18 that was put on by The Stella Effect and hosted at the Center For Courageous Kids in Scottsville, KY. This has become a beloved annual tradition for our family, and something we all always look forward to. There is nothing quite like gathering with dozens of other trisomy families from across North America! Thank you Stella Effect and CCK! Check out this awesome IG post for CCK 2025 highlights!).
Back to this dad. He was telling me when his daughter was born with trisomy 18 back in April of 2023 that they were all just waiting for her to die because that is all they were told to expect. They were told her condition was “incompatible with life” and that at best she would only live a few hours or maybe days. They didn’t do NICU stuff. They weren’t even really offered any interventions for feeding or anything. Their whole family was gathered to welcome her to the world and to say goodbye. But it turned out that she was at least somewhat compatible with life! He then went on to share that eventually their hospice nurse was like, “uh… I think she’s hungry!” So they just kept feeding her and she kept growing. Then he said to me, “I mean, I still have her coffin in my shop!” I teared up and got chills all at the same time.
Nothing says LIFE quite like an unused coffin.
🛠 He Shed She Shed
Katie has been going on for months, calling it a He Shed She Shed (for those of you just tuning in, I am building a studio space in my backyard). She kept looking at me, bouncing her eyebrows expectantly like, “Isn’t that amazing?!” And I would kinda raise my eyebrows and half-smile and nod with feigned approval and a, “Yeah…ok!”—and then move on—a bit perplexed by the whole encounter.
After my first post, (you remember, that June one that came out in July?), she was like, “I can’t believe you didn’t call it a He Shed She Shed! It’s perfect! What a missed opportunity!” I then had to come clean and admit that I actually had no idea what she was talking about. She was stunned and had to explain “He Said She Said” to me. A nuanced cultural expression that I had frankly never heard before (you know, because English isn’t my first language or whatever (that’s a joke I often make about not understanding English phrases… I merely grew up in a different country but mostly spoke English goodly enough)). “He Said She Said” refers to a situation where two individuals give a conflicting account of the same thing. Wait—you knew that one already?? Fine.
To Katie’s credit, it is indeed a perfect name. I originally wanted to build the space as a She Shed—a place for Katie to get some quiet and solitude from time to time—although, I was definitely planning to take it over occasionally to write and record in (…fine, you’re right. I was building it for my own quiet and solitude and jam sessions. A solo guy in a house full of wonderful ladies needs a space to call his own!). So, He Shed She Shed is exactly what it is—conflicting explanations for the same space.
Here’s my favorite line from ChatGPT: Phase 1 is complete, and though it’s still rough around the edges (like its builder), it already feels like holy ground. I don’t know why AI just assumes that I am rough around the edges?! Maybe it’s my contumelious use of vocabulary…? Definitely feels a tad presumptuous! But the holy ground part is pretty cool!
Phase II is underway (framing and floor joists) and Phase III supplies are ordered and en route (roofing and subfloor)! Things are starting to come together now, although I had made zero progress in over two months… It turns out that you need money in order to get anything done on a building project… Who knew!? And money, as we all well know, does not grow on trees. In fact, it barely even grows in banks (0.38% savings interest?? is that a joke?!)—especially if you barely have a real job like me… But, we are slowly headed in the right direction!
If you are like any normal person who has not likely used geometry since high school, it is quite possible that you have never tried to build a house out of triangles… Let’s just say, I mostly used “try”angles—meaning it was a lot of guess and check work to get it right…
✍ Writing Update—Title??
Everybody knows how important a book title and cover are—after all, we’ve all been told not to judge books by their covers (though I definitely still do on occasion…🤫). So I have been pondering this very thing for years. How do I want my book to look? What do I want my book to communicate in that instant of being seen (and judged)? (cause y’all do it too!) How should it make a potential reader feel? What words or colors or images would draw you in? I have chewed on dozens of possible titles and subtitles, but nothing ever felt quite like a click.
Then, I was thinking about the meaning of my name the other day. David means Beloved1 (⬅follow that footnote if you want to know how I felt about that meaning as a kid…). I have not thought about this in probably more than 20 years. And then, there it was—a title came to me, like a whisper. It was subtle and simple, but felt deeply resonant in a way—tying my name, my story, and my transformation all in one. It settled like a butterfly on my soul, almost imperceptible. But I felt a click.
I AM BELOVED.
My book is my story—of discovering what it means to be loved (see what I did there?). I once was lost, but now am found. I want my story to inspire people to discover this love for themselves, so that they can discover authentic worship and rest in the goodness of God. And I think part of that (at least) can only come once you realize that you are the beloved. I feel the same yearning as Paul in his letter to the Ephesians (3:14-19; ESV):
"For this reason I bow my knees before the Father, from whom every family in heaven and on earth is named, that according to the riches of his glory he may grant you to be strengthened with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith—that you, being rooted and grounded in love, may have strength to comprehend with all the saints what is the breadth and length and height and depth, and to know the love of Christ that surpasses knowledge, that you may be filled with all the fullness of God."
Did you catch it? “Being rooted and grounded in love, may have the strength to comprehend…and to know the love of Christ…” Folks, if we don’t know the love of Christ, if we are not rooted and grounded in that love, we will never live transformed by that love. That’s why Paul was on his knees, on behalf of the believers in Ephesus—praying that they would have the strength to comprehend that love. You cannot have an encounter with that love and remain unchanged.
But I don’t know… After my last post and my supposedly “ignominious” application of the Song of Solomon, my hermeneutics have come into question somewhat 😅 —so what do I know! Please, dear reader, let me know if this idea tracks or if you think it’s dumb and I am way off! I’d sincerely love to hear your thoughts!
📚 Book Talk
I promise I wasn’t planning to do Book Talks every month—but I keep thinking of good recent ones that you just gotta know about! I would be remiss if I did not hark and herald these illustrious works of ingenuity!
The Name of the Wind by Patrick Rothfuss
This book is stunning. Its prose is poetry and music. It is the first book in the epic fantasy series trilogy, The King Killer Chronicle. It is the story of Kvothe who is now living an unremarkable life as an innkeeper, but decides to dictate his life and adventures—and boy does he have some adventures! The beauty of the writing, the brilliance of the story, the slow unravelling and build up—it is a feast for the mind. I never wanted it to end. I finished the book and immediately went back to the first chapter. (BE WARNED: although this book was published in 2007 and book two in 2011, book three has not come out yet, much to the consternation of the fans… There’s nothing like a nearly two decades long cliff hanger to build the narrative tension…)
Big Dumb Eyes by Nate Bargatze
WHAT A TREAT! Beloved comedian, Nate Bargatze, has written a book! (I know! Surprising!) Do yourself a favor, listen to the audiobook. It is basically just like his stand up material, but with even more details and rabbit holes. It is a collection of personal stories of his past and his journey to comedy, it is confessions about his shortcomings [mostly, as a man], and even his opinions on certain things—notably his disdain for onions! It is so fun.
Killers of the Flower Moon by David Grann
Now this one is chilling, mainly because it is true. Like, this all happened. In the Land of the Free. Last century! The Boston Globe nailed their endorsement: “A masterful work of literary journalism crafted with the urgency of a mystery.” It reads like a who-dunnit thriller—you’ve got a string of murders against wealthy members of the Osage tribe, you’ve got a fledgling FBI and a former Texas Ranger, and a huge conspiracy centered on the profligate, dark side of mankind. After the Osage Nation was forcibly relocated, oil was discovered on their land—making them exceedingly wealthy overnight, essentially. A number of white men in the area can’t handle it and decide to take matters into their own hands. After all, killing a Native American at that time was not really considered murder as much as it was considered animal cruelty. Like I said, chilling.
My Friends by Fredrik Backman
Fredrik Backman, this brilliant Swedish author, cannot get it wrong. He churns out incredibly moving stories with such ease and proficiency—it’s astounding, really. A Man Called Ove, Anxious People, Beartown—his writing is hilarious, his characters are complex and relatable—the world he writes is immersive, you feel like you are a character in the story. I cry like a baby at the end of every one, I think. Do yourself a favor, and get this book inside your belly. (No, I don’t mean to eat it… You know—I don’t really know what I mean… But I am pretty sure that people say that…).
Nobody Wants Your Sh*t by Messie Condo
Admittedly, this book likely ain’t for everyone. BUT, I am sure that most of us all have one thing in common—we all have too much stuff. Speaking of Swedes—Messie Condo writes this practical little book centered on the idea of “Swedish Death Cleaning”—which is the art of decluttering before you die. In her words (ish), so that your children can spend their time after you’re gone fondly remembering you for who you were instead of cursing your name as they hack their way through box after box of your lifetime of accumulated artifacts and trinkety collections in your garage and attic. Sometimes, she gives you the foul-mouthed best friend somebody-had-to-say-it thing, but she’s also surprisingly compassionate. The cultural norm is you die, and someone else goes through your stuff—but she flips that and follows a page from the Swedish Book and puts the onus of responsibility on the individual to declutter their own things while they are still alive.
Everything Sad Is Untrue: (A True Story) by Daniel Nayeri
I don’t think I can praise this book enough. This is the autobiographical work of a Persian refugee boy named Khosrou, whom everyone in his new home state of Oklahoma calls Daniel (because they can’t say his actual name). He fled Iran in the middle of the night with his mom and sister, after his mom’s embrace of Christianity put them in danger with the secret police. It is a story that humanizes the refugee, it gives a voice and authentic look at their experiences, their losses, and their struggles. It is beautiful and terrifying and often comical. It is profound and raw and eye-opening, as Nayeri wrestles with his identity (and loss of that identity) and reveals truths about God and man—in the eloquent, centuries-old story-telling prose of some of the greatest Persian Poets of old.
🔭 Looking Ahead
Next Month:
- I’d love to have my Title and Subtitle nailed down!
- I may share some Dad Hacks 2.0?? If it feels right…
- We might have a small lesson in History…
- And hopefully my shed will be under roof!
Stay tuned!
Thanks for being here (if you made it to the end!)
Gratefully,
David
P.S.
Fine, we will run it back once more! If you enjoyed this newsletter, would you forward it to a friend who might like it too? If they subscribe and reach out and say that you referred them, I will send you each a $5 Starbucks gift card… 👀 (terms and conditions apply—namely, this offer is first come first served!)
- I was your typical boy’s boy—LEGOS, army men, wooden swords. I played in dirt, rode my bike, built forts. I dug trenches with my cherished Army issued field spade, wore holes into the knees of all of my pants, and occasionally had my clothes laundered. I hated to shower. I hated to wear dress shoes. And I hated to go to school and to church (especially because you had to wear dress shoes at the latter). But most of all—I hated love. There was nothing grosser than love. Hearts, kissing, holding hands—yikes! It was all disgusting. Not a hard guess which holiday made me the most uncomfortable (but the candy wasn’t so bad). I pinched my eyes tight if there was ever a smooch in a movie. I was even unnerved by the color RED.
So you can imagine how I felt when I discovered that my NAME meant BELOVED. I was mortified. Utterly repulsed. I was ashamed. It felt like a sick betrayal. It felt like the very fabric of my being was eternally stitched with cooties. Why couldn’t I have a cool name like Conan (little wolf) or Oberon (noble/bearlike)?? My name was BELOVED!! I might as well paint a giant red heart on my forehead, wear a dress, and frolic through a field, plaiting myself a crown of daisies! ↩︎
DAVID SCOT MUSSER 