“I can do six impossible things before breakfast.” 

That’s not just a quote — that’s Mattie. 

From the moment he arrived in this world, Mattie has defied expectations, bent the rules of medicine, and flipped the bird at every limit anyone tried to place on him. He’s bold. Brilliant. Impossible — in the very best way. 

And now, we’ve reached the chapter no parent ever wants to write: 

Mattie is nearing the end of his life. 

After years of impossible odds, unexpected victories, and that signature mischievous sparkle in his eye, it’s time to let his body rest. True to form, Mattie is leading the way — calling the shots even now. We are beginning gentle, sacred care deescalation, at Mattie’s pace. 

We don’t know how long this part will take, and that’s okay. We’re following his timeline. 

He’s in the hospital, wrapped in comfort, surrounded by love. Michael and I are right here, holding his hand, soaking in the weight and wonder of these moments. We are utterly heartbroken — and unspeakably proud. 

We are exhausted. We are overwhelmed. We may not be able to respond to every message, every offer, every check-in — even though we feel the love and support behind them. Please give us grace as we focus every ounce of energy on Mattie. 

Mattie has spent his life smashing expectations — challenging hospitals, schools, insurance companies, churches, community organizations, government systems, and even the laws themselves. He didn’t just survive; he changed things. He made decision-makers rethink how kids like him are seen and treated. He forced the system to look at itself — and do better. 

All of this, while giggling at wildly inappropriate jokes, making unhinged 2 a.m. commentary, and flashing that little smirk that said, “What if I am the chaos?” 

He’s changed hearts. Moved mountains. Exposed injustice. Made people uncomfortable — in all the right ways. And he’s done it all while snuggled in fuzzy pajamas, clutching a tablet, running the show with sparkles and sass. 

This isn’t goodbye. It’s “see you later.” 

But let’s be honest: it still hurts like hell. 

Please pray for Mattie’s comfort. 

For our peace. 

For the grace to walk this last road with tenderness and courage. 

And for our family as we begin to face the world without Mattie physically here. 

And when Mattie flies free — when his soul takes off and the world trembles just a little — and you notice empires fall, bad laws crumble, and soulless bureaucracies, insurance companies, and institutions quake in fear? 

Yeah. That’s Mattie. 

Wreaking holy havoc from Heaven. 

Let’s teach the world how to say goodbye. 

There’s no silver lining here. No tidy bow. Just this: 

This really fucking sucks. 

And still… 

What a gift he is. 

If you want to help: 

👉 DoorDash gift cards are a huge blessing right now — hospital food gets old fast, and sometimes grief just needs fries. 

👉 Michael’s parents are holding things down at home with the older kids. If you want to help there, don’t wait for me to organize or ask — just do the thing. I cannot carry one more clipboard of logistics. Communicate with Misty Lester and Vickie Fowler Lummus 

👉 To send support, gift cards, donations, or words of encouragement you can also do it here through this SupportNow page. 

Thank you for walking beside us. 

This really fucking sucks.