A Spooky Tale, A Board Game, and a Wake Up Call

CTNNB1 🧬 Host of Once Upon A Gene Podcast 👨‍👩‍👧‍👦 Empowering families navigating rare diseases

We went to Suncadia last weekend, it’s just over the mountain pass and our kids’ favorite place. It’s where Casey and I got married so it has magic for us too. Wild flowers, wildlife, pools, ice cream, trails and the glorious smell of pine trees.

We’d recently bought a Monopoly game because we thought Ezzie was finally ready. On her very first try, she destroyed us. She got a lot of advice from her daddy along the way but still made her own choices.

So that night at Suncadia, we planned a rematch. Just the three of us. The plan was to put Ford to bed, pour some wine, and play a game. My husband is an evil game master, he’s ruthless and annoyingly strategic. My only goal is to make sure someone – ANYONE – beats him. If it is the 6 year old who prevails then so be it!

We were about to start setting up the game when Ezzie said,

“Ford’s playing too.”

Meh, we didn’t really respond – just kept getting things in order for game time.

“Sissy, he’s had a long day and needs to get to bed,” I said. “Yep, Ford buddy needs some rest,” Casey added.

Ford has a rare genetic disorder called CTNNB1 syndrome. It affects all aspects of his life including how his body moves and how much effort everything takes, for him and for us. Nights usually end early for him.

She wasn’t buying it. She got in his wheelchair and started maneuvering it around to the table and said,

“Ford, you want to play?”

And he said yes.

We heard the yes and said,

“You want to sit in your wheelchair, buddy?” He said no.

I looked at Casey – See? He doesn’t want to play. He’s just being silly.

Ezzie crossed her arms, this kid was born during a blood wolf moon eclipse, and trust me, she’s lived up to it ever since and said,

“If Ford’s not playing, nobody’s playing.”

And that was the moment. A physical reaction.

Casey looked at me. I looked back at him. We didn’t have to say a word. Just that shared oh shit.

Did we stop including him because it’s hard?

Because it is. It’s hard to manage his dystonic body, to adapt everything, to risk breaking things, the spills and the meltdowns. It’s hard to give up the little patches of calm we fight for. But maybe it’s not just that it’s hard. Maybe we’ve started choosing what’s easier. Oof.

So we figured it out. I pushed two soft leather chairs together so if he tipped, he’d be safe-ish. I sat beside him to steady him. He was grinning ear to ear. Ezzie showed him the pieces, and he picked the dog.

It took a few tries to understand what he was repeating, but then we got it –

“Taking turns.” He said it again, louder, proud. I could tell the ‘taking turns’ thing was something his team at school was working on and he was nailing it.

And then we played.

He rolled the dice, I held them up for him to see and he counted the dots and was right almost every time. Ezzie moved his dog piece. He bought every property he landed on. Made his own calls.

When Casey told him, “That’s risky buddy, you don’t have much money left so you have the choice to be safe or risky,” Ford squealed, laughed, and said, “Risky!”

He was the first to build houses, the only one with hotels, and he smoked us.

He didn’t knock anything over. Didn’t lose focus. Didn’t break anything. He just played.

My husband and I sat there, watching this moment with our kids, We both knew we were witnessing something holy and something that shouldn’t have taken a six year old to remind us of.

When the game ended, Ford had hotels and took all our money.

But, Ezzie. She was the real winner.

She saw what we’d been too comfortable to see. She called us out without even meaning to. She gave us the kind of discipline that can only come from the pure innocent heart of a child. Of a sibling. Of a rare sister.

Maybe that night everyone won. Ford, because he got to belong in the moment. Ezzie, because she reminded us how to love better. Me, because I got to see joy in my kids and check off the value of a lesson learned. And Casey – because he lost. Thank the Lord. The natural order of the universe was restored.

The lesson: When convenience becomes a habit, connection starts to fade.

The fiercest little blood wolf moon eclipse child in the room is the best reminder of what love’s supposed to look like. Even if it’s partly because we’re all a little terrified of her.

That night, Ezzie didn’t just own Boardwalk. She OWNED Park(s) Place.

– Effie Parks, Rare Mom & Host of Once Upon A Gene