I'm revising an old post from Abbysworld after someone close threw something especially cruel at me last week with a straight face....
Imagine all the symptoms of Autism, Cerebral Palsy, Parkinson’s, Epilepsy, and more — all in one young person.
That’s as powerful a statement as we can make.
Lately, as my child gets older, there are a few things I want to say to many of you. Instead of pulling you aside one at a time, I’m putting it in writing so you won’t forget. If this makes you cringe and worry that I may be referring to you, I probably am.
These are things you are not allowed to ask me, say to me, or discuss with me — as her mother. I’m all for awareness and education, but really, people… take your ignorance elsewhere.
1. "What’s her prognosis?"
F off. That’s her prognosis.
What I hear is: Is she going to die? When is she going to die?
It’s a thought I live with 24/7 — I wake up with it every single day. I don’t want to discuss it with you.
Do you Muggles actually talk like this? I mean, I have a typical child too, and no one ever asked me if he was going to die or if I thought he’d ever be “better.”
2. "Do you think she knows where she’s at?"
Umm… she can see. She can hear. She just heard you say that.
Yes, she knows.
How many times do I have to explain that her brain is intact?
It’s the connection between her brain and her body that’s impacted — and you don’t get it.
And y’all act like she’s the slow one?
3. "What’s wrong with your girl?"
Her mom takes her to places where idiots ask stupid, insensitive questions.
That’s what’s wrong.
4. "Does she have her period yet?"
What? Do you have yours?
Do you seriously ask people this?
Here’s the thing: don’t ever talk to me about this unless you are another special needs parent of a girl and you genuinely need advice.
That’s the one and only time it’s acceptable.
While you Muggles get to celebrate a “rite of passage,” we get to mourn another thing our child will never experience.
Do you think I get to tell her she’s a woman now and give her the baby speech?
No. No babies. No grandchildren.
None of your business.
Once again — F off.
5. "Oh look, she remembers me!"
Really? Like a dog at your granny’s?
Amazing, isn’t she?
We’d have her do tricks if it wasn’t for the wheelchair and that whole lack-of-body-control thing.
TAH-DAH!
6. "She’s always so happy. I don’t know how, with everything… you know…"
No. I don’t know, you stupid cow.
She’s happy because she is loved.
She’s the center of her own universe.
Her world really does revolve around her.
Who wouldn’t be happy?
Assholes.
7. "She’s sure noisy for a nonverbal kid."
And you’re sure an asshole.
Why don’t you go ahead and tell her to shut up?
Tell her to be quiet when she’s expressing herself in the only way she can.
Or here’s a better idea: use your perfect strong legs and walk away if you don’t like it.
8. "I don’t know how you do it." / "I couldn’t do it."
OMG. Seriously?
You couldn’t take care of your own child?
You couldn’t look into those eyes — eyes that look to you for everything — and do whatever it takes, every day, all day?
Wow. Just wow.
9. "She seems a bit lazy."
Umm… because she can’t stand or sit on her own?
Because she can’t walk more than a step without falling?
Or maybe it’s because her teachers have been holding up two cards for nine years asking her which one is pink and which one is blue — and still expect her to be interested?
Enlighten me, Knower of All Things!
10. "Do you ever wish you hadn’t had her?"
Drop kick.
To the face.
Your face.
I picture it every time.
And one day, I swear… I’m gonna do it.
________________________________________________________________
And then there’s this one — the quiet dagger:
“It’s not like this wasn’t always going to be the outcome.”
That one bites deep.
Like when someone says, “Well, you knew this was coming,” after a long illness. As if knowing softens the blow.
As if watching your child slowly fade makes it easier to lose them.
What you don’t understand is that every Rett mom — every single one of us — wakes up each morning and has to take that first breath, praying it’s not the day we lose her.
That doesn’t go away. It never gets easier. It never stops.
Yes, I’ve known since the diagnosis.
Yes, I carry that reality in every cell of my body.
But knowing what’s coming doesn’t mean I love her less.
It doesn’t mean she matters less.
She is still my child. Every day. Every breath. Every heartbeat.
So when you say something like that, know this:
You are not reminding me of reality. You are reminding me that not everyone is built to love someone through every version of their life.
But I am. I have been. And I always will be.
And while we’re at it — let’s talk about the word retarded.
It’s not cute.
It’s not funny.
It’s not “just a joke.”
And if you still use it — you are the one showing signs of society’s warped definition of the word.
Not my daughter. Not any of our children. You.
This word has been used to mock, belittle, and erase people like my girl.
It’s not edgy. It’s not ironic. It doesn’t make you clever or cool or savage.
It makes you small.
And before you come at me with, “Well, Elon said it…” or “This celebrity used it…” — I don’t care if you’re famous, rich, or hold a trillion-dollar stock portfolio.
When you use that word, all I hear is ignorance — loud and proud.
And I promise you: no amount of money or followers can buy back your decency once you’ve thrown it away.
Say it, and you’re telling the world who you are — not who my daughter is.
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