Gigging adventures

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My Parents are Dead and My Sister is Disabled

congalineofdurin:

cockismybusiness:

team—wolverine:

therealbarbielifts:

eisforedna:

On May 28th, my sister, Edna, turned 31.

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Her mental age is about three years old. She loves Winnie the Pooh, Beauty & the Beast, and Sesame Street. Even though the below picture is unconvincing. 

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Edna and “Cookie.” I think she was trying to play it cool. 

My name is Jeanie. I’m Edna’s younger sister. I’m also her guardian and caregiver. 

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That’s me on the left. (Hey, you never know. After a year of writing a blog about online dating - Jeanie Does the Internet - I’ve come to learn that there are A LOT of fools on the internet.) 

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ANYWAY, I’m not “doing the internet” anymore. I’m taking care of Edna full-time, after completing my MFA in Writing for Screen & Television at USC.

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May 16, 2014. I wanted a picture. Edna wanted breakfast.

In case you’re wondering where our parents are, they’re dead. Our mom died of breast cancer when she was just 33. 

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Us with mom before she died. (Obviously.)

As for our dad, he peaced-out around the time my mom got sick. His loss - we’re awesome. 

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Here we are being awesome at the beach. Pushing a wheelchair in the sand? Not so awesome. 

In case you’re wondering “What’s wrong?” with my sister - as a stranger once asked me on the street  -  NOTHING. Yes, Edna has a rare form of epilepsy - Lennox-Gastaut syndrome - but I don’t know if that’s anymore “wrong” than people who don’t have manners. 

Basically, Edna was born “normal,” and started having seizures as a baby. They eventually got so bad that they cut off the oxygen to her brain, causing her to be mentally disabled. Or impaired. Or intellectually disabled. Or whatever you want to call it - except “retarded,” because in 2010, President Obama signed Rosa’s Law into effect, replacing that word with “intellectually impaired.” 

Which is cool and all, but services for the disabled and the people who care for them are SEVERELY LACKING. Also, there’s a bunch of people working in taxpayer-funded positions who are supposed to help families like us, but don’t. (Big surprise, I know.) They just fill out paperwork (whenever they feel like it) with asinine statements like this: 

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YUP. I transport my sister down the stairs in her wheelchair, because that is not only safe, but TOTALLY PRACTICAL. Why doesn’t everyone in a wheelchair just take the stairs, for God’s sake? Stop being so lazy, PEOPLE WITHOUT WORKING LEGS! 

But, as it says above, Edna’s legs do work. Whether or not she wants them to, is another story. 

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Edna refusing to go inside. 

These are the stairs that I have to carry her up - by myself - on a daily basis. That is, until one of my legs break and both of us are just sitting at the bottom of the stairs, helpless. 

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For six months, I have begged - BEGGED - the State of California to help my sister, which they are required by law - The Lanterman Act specifically - to do so. But they’ve told me “these things take time” and that I “need to amend my expectations.” (That was said to me when I refused to place Edna at AN ALL-MALE CARE FACILITY. Because yes, that was an “option” that was offered to me.) 

Prior to Edna moving in with me in my one-bedroom apartment, she was living with her amazing caregiver, Gaby, back in Tucson, where we went to high school and I did my undergrad. Edna’s reppin’ the Wildcats below. 

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But back in November, Gaby also died from breast cancer. (FUCK YOU, BREAST CANCER!) This picture was taken a month before she died. She never even told me she was sick because she didn’t want me to worry. 

By the way, we were raised by our grandma. Edna and her were very close.

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She’s dead, too. Surprise.

She died when I was 20 and Edna was 21. That’s when I became Edna’s legal guardian and Gaby stepped into the picture to help me out with Edna. 

So, six months ago, after Gaby died, I moved Edna to California, where I tried to get the folks over at The Frank D. Lanterman Regional Center to help me. I’ve told them I’m worried about our safety - that one of us could get hurt on the stairs -  I’ve told them I can’t afford to pay the private babysitters $15/hour because the ones social services sent me who make $9/hour were unreliable (they didn’t show up on time or at all so I could get to school and work), untrustworthy (one of them let Edna go to the bathroom in the kitchen and then took her into the bathroom because “that what I thought I was supposed to do.”) 

But the people over at the FLRC don’t return my calls, they don’t file the paperwork on time - and the first caseworker that was assigned to us actually LAUGHED AT my sister when he came to our home to evaluate her. When I reported him to his supervisor, she told me, “That’s just [insert name of said jackass].” 

He was one of the two caseworkers that contributed to the report I mentioned above, which also included this: 

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So let me get this straight - I have to feed, bathe, dress and help Edna in the bathroom and you can’t deduce whether or not she is able to vote? What in the fuck?!

Now I realize I seem angry. And you can bet your balls I am. I’m also sad. Sad for those who don’t have family to stick up from them and who waste away God knows where, monitored by no one. Or monitored by people who physically and sexually assault them

I’m also sad for the caregivers who are SO EXHAUSTED - trying to take care of their loved ones - while also trying to take care of themselves and battling a system that is supposed to help, but does nothing of the sort. And I know a lot of people give up. They let their dreams, their marriages, their friendships slide. All while trying not to resent the very person you’re doing it all for.

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Edna wanted to sit next to me the other day while I was writing. Clearly, she’s not impressed. 

Here’s the thing: I REFUSE TO GIVE UP. I’M NOT GIVING UP ON HER OR MYSELF. I’m going to pursue my dreams while taking care of her, AND while ensuring that the people paid to do their jobs ACTUALLY do them.

That’s where you come in. I need you to help me get my story out there. Because I know I’m not alone in this. I want to connect with families who are in similar situations and also show people who have no idea what it’s like to care for someone with a disability (or even a loved one who is sick) that it can be rewarding. Super fucking hard. Exhausting. Painful. Isolating. But, rewarding. 

I’m going to get help for my sister - and others. My hope is that by sharing our story, I can bring awareness to the lack of services and help for the disabled. 

Thank you, 

Jeanie 

Facebook:  facebook.com/eisforedna

Twitter: @EisforEdna 

This made me cry

SIGNAL BOOST

STOP SCROLLING. THIS PERSON ISN’T ASKING FOR MONEY AND THIS POST WON’T MAKE YOU SAD.

This is a really uplifting and inspirational story of a family sticking by each other and making things work despite a whole lot of shit

They just want to find other people in the same position they are, for a sense of community and to feel like they aren’t alone.

I know out of all of you, some of you have followers who are living with and taking care of intellectually or emotionally disabled family members, and this lovely and unbreakable pair of sisters need to find them.

SIGNAL BOOOOOOOOOST

(Source: , via scarletplanetmoon)

126,320 notes

geek-studio:

Geek Studio’s Nintendo Giveaway!

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(via cecil--gershwinpalmer-deactivat)

293,330 notes

lexliftlove:

thebutterflytales:

adventuresinhousewifery:

ihondurican:

yolesoteldo:

Dear Cutie-Pie,
Recently, your mother and I were searching for an answer on Google. Halfway through entering the question, Google returned a list of the most popular searches in the world. Perched at the top of the list was “How to keep him interested.”
It startled me. I scanned several of the countless articles about how to be sexy and sexual, when to bring him a beer versus a sandwich, and the ways to make him feel smart and superior.
And I got angry.
Little One, it is not, has never been, and never will be your job to “keep him interested.”
Little One, your only task is to know deeply in your soul—in that unshakeable place that isn’t rattled by rejection and loss and ego—that you are worthy of interest. (If you can remember that everyone else is worthy of interest also, the battle of your life will be mostly won. But that is a letter for another day.)
If you can trust your worth in this way, you will be attractive in the most important sense of the word: you will attract a boy who is both capable of interest and who wants to spend his one life investing all of his interest in you.
Little One, I want to tell you about the boy who doesn’t need to be keptinterested, because he knows you are interesting:
I don’t care if he puts his elbows on the dinner table—as long as he puts his eyes on the way your nose scrunches when you smile. And then can’t stop looking.
I don’t care if he can’t play a bit of golf with me—as long as he can play with the children you give him and revel in all the glorious and frustrating ways they are just like you.
I don’t care if he doesn’t follow his wallet—as long as he follows his heart and it always leads him back to you.
I don’t care if he is strong—as long as he gives you the space to exercise the strength that is in your heart.
I couldn’t care less how he votes—as long as he wakes up every morning and daily elects you to a place of honor in your home and a place of reverence in his heart.
I don’t care about the color of his skin—as long as he paints the canvas of your lives with brushstrokes of patience, and sacrifice, and vulnerability, and tenderness.
I don’t care if he was raised in this religion or that religion or no religion—as long as he was raised to value the sacred and to know every moment of life, and every moment of life with you, is deeply sacred.
In the end, Little One, if you stumble across a man like that and he and I have nothing else in common, we will have the most important thing in common:
You.
Because in the end, Little One, the only thing you should have to do to “keep him interested” is to be you.
Your eternally interested guy,
Daddy
Happy International Women’s Day

This is so beautiful. I almost cried.

And yet the letter starts with a reference to his daughter’s looks.

Cutie-pie doesn’t necessarily mean it’s referring to her looks. You can be cute in more ways than just your looks. Just saying. 

^^Seriously, you’re going to make a comment about how a dad called his child cutie-pie? This was so touching and beautiful and you have to bring it down. A father calling his daughter cutie-pie has nothing to do with him talking about her looks. It’s a freaking nickname. 

lexliftlove:

thebutterflytales:

adventuresinhousewifery:

ihondurican:

yolesoteldo:

Dear Cutie-Pie,

Recently, your mother and I were searching for an answer on Google. Halfway through entering the question, Google returned a list of the most popular searches in the world. Perched at the top of the list was “How to keep him interested.”

It startled me. I scanned several of the countless articles about how to be sexy and sexual, when to bring him a beer versus a sandwich, and the ways to make him feel smart and superior.

And I got angry.

Little One, it is not, has never been, and never will be your job to “keep him interested.”

Little One, your only task is to know deeply in your soul—in that unshakeable place that isn’t rattled by rejection and loss and ego—that you are worthy of interest. (If you can remember that everyone else is worthy of interest also, the battle of your life will be mostly won. But that is a letter for another day.)

If you can trust your worth in this way, you will be attractive in the most important sense of the word: you will attract a boy who is both capable of interest and who wants to spend his one life investing all of his interest in you.

Little One, I want to tell you about the boy who doesn’t need to be keptinterested, because he knows you are interesting:

I don’t care if he puts his elbows on the dinner table—as long as he puts his eyes on the way your nose scrunches when you smile. And then can’t stop looking.

I don’t care if he can’t play a bit of golf with me—as long as he can play with the children you give him and revel in all the glorious and frustrating ways they are just like you.

I don’t care if he doesn’t follow his wallet—as long as he follows his heart and it always leads him back to you.

I don’t care if he is strong—as long as he gives you the space to exercise the strength that is in your heart.

I couldn’t care less how he votes—as long as he wakes up every morning and daily elects you to a place of honor in your home and a place of reverence in his heart.

I don’t care about the color of his skin—as long as he paints the canvas of your lives with brushstrokes of patience, and sacrifice, and vulnerability, and tenderness.

I don’t care if he was raised in this religion or that religion or no religion—as long as he was raised to value the sacred and to know every moment of life, and every moment of life with you, is deeply sacred.

In the end, Little One, if you stumble across a man like that and he and I have nothing else in common, we will have the most important thing in common:

You.

Because in the end, Little One, the only thing you should have to do to “keep him interested” is to be you.

Your eternally interested guy,

Daddy

Happy International Women’s Day

This is so beautiful. I almost cried.

And yet the letter starts with a reference to his daughter’s looks.

Cutie-pie doesn’t necessarily mean it’s referring to her looks. You can be cute in more ways than just your looks. Just saying. 

^^Seriously, you’re going to make a comment about how a dad called his child cutie-pie? This was so touching and beautiful and you have to bring it down. A father calling his daughter cutie-pie has nothing to do with him talking about her looks. It’s a freaking nickname. 

(via scarletplanetmoon)