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.
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.
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.)
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.
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.
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.
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:
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.
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.
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.
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.
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:
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.
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.
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.
hey!!! i saw this on twitter this morning (link for those of you who wanna see the tweet) and i haven’t seen any posts about it here so i wanted to spread the word about it since this project looks really really cool and promising and i wanna see it succeed!!
two scoops is a dating sim where you play as a young woman who just got a job at a local family owned ice cream shop, two scoops. there’s a better description on the kickstarter page (you can also just click the image to go directly to it) but in essence it’s a dating sim game with a lot of unique and diverse romance options ! here are the current ones as of now:
you can also customize the main character’s basic appearance and choose her name !
this project looks extremely promising and interesting, the artwork and style is gorgeous (here’s some backgrounds)
there’s also some stretch goals for the project including a brand new romanceable character !!
i really really wanna see this get funded, the diversity is really really refreshing especially for a dating sim, the artwork is gorgeous and i wanted to spread the word. reblog this post, tell your friends, help back it if you can, i really wanna see more games like this and i’m extremely excited to play the full thing if it gets funded !!
i contacted the help department of netflix and they said to go here to request a second season:
help.netflix.com/en/titlerequest
apparently this is the main way netflix accepts this kind of input. if you have an account already all you have to do is submit the request! it’s quick and easy please reblog this <3
if you’re seeking to help refugees and are able to assist and translate short messages (in English, Arabic, French, Farsi, Turkish Urdu, German, Pashto among others), this is for you.
they interviewed a mother of a child who’s missing from the ariana grande concert and i cannot imagine the amount of worry and pain she’s in
the mother’s name is charlotte and her missing daughter’s name is olivia campbell. if anyone has seen her/has any info on her whereabouts, PLEASE call the emergency number at 0161 856 9400.
Hello. Six months ago I asked you to help me because my parents kicked me out after they found out I’ve fallen in love with a girl. I was working in their place and I lost that job too.
My boyfriend at that moment told everyone I know about this and spread some lies. He took my dog and a lot of my stuff. He stalked me. He found my tumblr as well and I had to make a new account.
I live in my friend house but it was really small so I slept on the floor in the pantry for the last five months.
Now I live in a tiny tiny room and have half time job as a waitress.
Two months ago I finally went to psychiatrist and I was diagnosed with severe depression and obsessive-compulsive disorder. It was a lot to finally have someone to talk to about everything. The problem is that I don’t have the money for all of these meds she prescripted me. I already take asthma medications for couple of years and others for my sensitive stomach. The meds from psychiatrist are quite expensive because I had to choose private payd visit instead of free because they told me I had to wait four months for it. And I can’t wait that long. I have suicide thoughts and I’m afraid what I could do. And I’m still waiting for the therapy.
These are my meds now
And the proof of how much they cost
I can’t really afford for all of them right now. And I really need to use them because I already feel a little better and I don’t want to be depressed anymore.
And I don’t really have money for even food. I mostly eat only twice a day.
I hope this is enough proof for people who are attacking me saying that I’m lying.
I’m from Poland and here if you go to the private doctor you need to pay 100% for the meds even with the insurance. And the rest of them is still expensive even with 10 or 30% being cheaper.
Also we don’t have any coupons for meds and any apps. You have that in America, that’s great. But we don’t.
And this month my doctor added some new meds for my asthma (i had spirometry test and it came out pretty bad) and because of that right now I don’t have anough money to pay my rent.
I talked with my landorld who is a sweet older lady and she is so wonderful that she let me be a little late with my rent. So I have time to the end of the month.
I’ve made new posts and least five times because every time the post hits 1k notes people are starting to ignore it, thinking I already have thousand of dollars. Well I don’t, because people are just mostly reblogging it.
I know some people are annoyed by my friend asking everyone to reblog my post. She only wants to help me, because we know each other from childhood and now she is far away from me and can’t really help me. Please don’t be mean to her. She is an angel. And you are also annoying with me (if the messages about me just killing myself because i’m dirty lazy fagot tells anything) but please bear with me for few more days. I’m trying, I really am but it’s hard when you are all alone.
So if you could spare few dollars please send them via paypal
My email: anne.du@mail.com
You can choose any currency you want. Thank you for any help! And please reblog this post.
this is a blog to help and support other fellow students. a place students can come to, to receive advice if they’re struggling, or if they don’t understand something.
we aim to add many members to this group, so that anyone can come with a query or problem and we will have someone to provide a solution, or who knows enough about the subject to help find a solution.
if you would like to join us, or become an affiliate, please go to the application page of our blog. even if you don’t wish to join, but know of some websites or resources that would be beneficial to students, then please send them to us! even spreading the word would be a great help to us.
chelsea manning’s gofundme went past its limit with $165k+ in 3 months but miss major’s gofundme can’t even break $90k and it’s been up for 49 months :/
We’ll try to trend the hashtag #RENEWTHEGETDOWN on twitter, the day is FRIDAY MAY 19TH 8 PM LONDON TIME. The goal is to arrive in the Wordwild top trendin, which means the first 10 positions. I know we can do it guys, so please, spread the word!
anyway it’s lesbian visibility day and this black lesbian is trying to fucking Move out of a shitty ass and mentally and emotionally draining home environment & situation & y’all know that takes dimes! & listen i’m saving i’m doing that but help is always welcome so if you’re into that kind of thing (not being homophobic and racist) hit that donate!
things are heating up in the Running Away From Homophobia fandom we’re about a stones throw away from completely finalizing living arrangements & its also both our birthdays in about two weeks. so if ur so inclined, help me & my roommate out by donating and making this a whole lot easier for us to do lol. we also made an amazon wishlist for some of the household things we’re in need of. nothing is required, but if u would rather buy something tangible than donate, ur more than welcome to do that too. we thank u for anything u can do, including just a reblog.
Okay so many of you know about Ramadan, the month in the islamic calander where every muslim who’s not travelling, pregnant, breastfeeding, diabetic or on their period or is ill or elderly has to fast from dawn until sunset and refrain from smoking, sex, swearing, etc. Instead of sending everyone I follow what I would like them to tag as #nsfr (not safe for ramadan), here is a list of things to tag:
food
nudes/ nsfw
kissing/ pda
smoking
bad language
I’d appreciate it if people reblog this so every muslim doesn’t have to ask the 400+ blogs they follow to tag stuff. Thanks!
Ramadan 2017 will tentatively begin in the evening of Friday, May 26th and ends in the evening of Saturday, June 24th!
hello, My name is Scott. I need a support dog to get over my mental illnesses but their quite expensive. If you can take the time to donate and share my gofundme with your friends, I will forever be grateful, thank you.
