Effie Parks

Rare Disease Advocate | Award Winning Podcaster | Speaker | Captain Connection | RareMama to my sweet, Ford, who lives with #CTNNB1 🦓

[Justin Trapp @justintrapp]

I just heard "I love you" from the living room. I look up and see my 8 yr old non-verbal son with his head poking up out of the couch smiling at me. He uses his iPad app to "talk" by pressing different buttons.

What a joy he is.

[The Figen @TheFigen_]

The newest firefighter has joined the team.

[Dr. Gator @DrJoelGator]

I swear SOMETHING broke in society after 2020—and nobody really talks about it.

Not masks. Not lockdowns. Not COVID.

I mean the FEELING of life.

Everything reopened. We went back to work. Restaurants filled up. Events came back.

But life still feels… different.

Years disappear faster. People feel more disconnected. Everything feels more expensive, more stressful, more rushed.

And somehow everyone is exhausted all the time.

I can’t even explain exactly what we lost.

I just know life before 2020 felt more ALIVE.

Tell me I’m not the only one who feels this.

[Effie Parks @OnceUponAGene]

@BruceHunterJr Liberating.
Kp thrive has always and will always be my most favorite hysterically bullshit slogan.

[Effie Parks @OnceUponAGene]

@bavedikian That's a great question, Brandon.
They're not at Costco.
They probably just stay in their apartments like all the other antisocial people here do. It's kind of their thing.

[Disability Scoop @disabilityscoop]

Federal officials are accusing #Lyft and its drivers of routinely denying rides to passengers with #disabilities and they are seeking millions of dollars in damages. #discrimination #JusticeDepartment https://t.co/G6joBohVJQ

[Effie Parks @OnceUponAGene]

@mattvanswol This poor sweet girl. 💟

[Effie Parks @OnceUponAGene]

@BrandiKruse Most corrupt ag in America

[Effie Parks @OnceUponAGene]

@itsme_urstruly American hero

[Effie Parks @OnceUponAGene]

@BrandiKruse 💯

[Effie Parks @OnceUponAGene]

@thehoffather 💀

[Effie Parks @OnceUponAGene]

@Legacy_831 Xo. You know.

[Effie Parks @OnceUponAGene]

When I’m feeling like this isn’t fair…
when everything and everyone sucks,
when I’m over it,
when it’s “why us!?”
...
I walk out and take my headphones off and see this;

woosah...

Oh.
Okay.
It’s okay.
Everything’s going to be okay.
I can do this.
I’m luckier and stronger than I think.

#raredisease #caregiver #advocatelikeamother #chasingglimmers

[Effie Parks @OnceUponAGene]

@RyanAFournier Him grabbing her wrist like that is so not ok.

[Effie Parks @OnceUponAGene]

Goodnight my little Gratito.

[Effie Parks @OnceUponAGene]

@PattyMurray You are the one who should be fired.
You and your cronies have abandoned the medicallly complex kids in WA. Where are their services?!!!

[Effie Parks @OnceUponAGene]

@MarketPalmer_ Cook

[Effie Parks @OnceUponAGene]

@musings_blonde Yes - with a scoop.
If you're a baker that is.

[Effie Parks @OnceUponAGene]

@homeandhearts11 My child isn't healthy - but I feel the same way.