On May 28th, my sister, Edna, turned 31.
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.
This made me cry
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.
slayerkitty replied to your post “somebody please tell me how the hell to keep my 3yo in bed. Nothing I…”Do they share a room?
yes they do!
I don’t have any answers but her are a couple things to try.
1) Start 3 year olds bedtime routine before brother so when he runs around it doesn’t bother brother.
2) Look at the bedtime routine. Consider adding a step or two that will aid in glide down. Adding back rubs may help. Lullybyes, a bath before bed. Those sorts of things. The key is to pick a routine and stick with it. It will take some time before you’ll know if this works because the idea is for the routine to cue sleep and it needs time to set.
3) Look at what he’s allowed to do before bed. Some activities hype kids up more. We limit screen time (TV, computer) before bed because we had problems if we didn’t.
4) Talk to your pediatrician and see what they say. They know your kid and often have helpful suggestions. Also, they can help on the off chance something medical is going on.
5) Melatonin - I hope I spelled that right. We use the one with ozzz in the name and get it from Amazon. We give it about 1/2 hour before bed and it helps them get sleepy. It’s a natural substance and can be helpful.
Wow, I had more ideas than I thought. We have had our share of sleep issues although not exactly the same as yours. I can give more detail about our routines if that helps.
5x18 reaction. Blaine’s headspace. that’s all I’ve got, really. ao3
Lying to Kurt sucks, plain and simple.
Even worse is lying to Kurt when he’s so excited, all adorably enthusiastic for a performance that - as of yet - doesn’t exist. Blaine tells himself that he’ll be honest the next day, before this goes too far. But he wakes up to a voicemail from Kurt, who had an early class today:
"Good morning, sweetheart! Before you start feeling all guilty, it’s okay that you didn’t pick up the phone. You’ve been so busy, so I don’t blame you for sleeping in when you can. Anyway, I just wanted to let you know that while I’m obviously not supposed to know about it, I am so excited for this showcase. We’re going to make it big! Together! God, I can hardly believe it.
I loved the juxtaposition in this of Blaine and instant gratification with food and Blaine not telling Kurt the truth about the showcase.
Watching Kurt and Blaine fence just gave me so many feelings.
It just did it for me. No wonder two of my 3 WIPs have fencing in them. :)
Anyone know if that was Chris and Darren or if they used stunt doubles? Especially Kurt had awesome form.
Okay. I’ve avoided the internet until I could write my own thoughts on Frenemies.
At the end, I have a theory.
First, I loved this episode.
I thought the Elliot/Kurt scenes were such a treat. The two play so well together and the timing of the lines was perfect, very snappy back and forth.
I loved their duet. Both voices mixed so nicely. More of that? Yes, Please. I also love when Kurt let’s his sensual side show in the music. More of that with Blaine would be great.
Tina and Artie are not my faves but their songs and acting were well done. Sue once again demonstrated why she is the worst principal ever. No wonder someone with a top GPA got wait-listed at Brown. Who could trust anyone that has been under the aegis of Sue Sylvester?
I was angry at Rachel but I believed what she did. She would see anything that gets near Funny Girl as a betrayal. It was an interesting choice for Santana to audition since she has said she is not interested in Broadway. I’m glad they gave a nod to the coincidence of two such talented girls coming from the same school.
I really liked Santana singing Don’t Rain on My Parade. It fit the plot, since Rachel is so busy worrying about herself she doesn’t see how important this is to Santana. Even though Naya sounded different than Lea singing the song, I still liked her version.
Okay, onto my theory. I think Elliot has a crush on Kurt. I think this is awesome and hilarious and will lead to great tension. Kurt is totally oblivious right now. He’s too busy being worried about Elliot’s talent. This isn’t unreasonable, look at how Blaine entered Kurt’s world and took it by storm from a talent perspective.
But Elliot just wants to be with Kurt. That’s why he picked a love song at the shop and why he kissed Kurt on the cheek in the photo.
I loved the scene when Blaine saw the photo, I wish they had followed up on that with a Klaine convo. Blaine would say, I think Elliot has feelings and Kurt would be totally dismissive saying there was no way, and even if he did, Kurt loves Blaine.
Anyways, it’s good to have glee back!
I’m so, so sorry, I’ve been insanely busy and kind of lost my grip on all of the things that needed and still need to be done. I’m working hard on editing my novel, and it’s taking me so much longer than I anticipated. But it is going to be epic!
I always have trouble visualizing things, since…
I have the same issue. My dialog rocks but writing descriptions is like pulling teeth.
One trick I use is to find inspiration pictures on the web and the pin them on a board on Pinterest that I create for the novel.
i may have watched too much Glee today
I don’t think that’s possible.
"Seasons of Love" Glee Cast (Season 3 Graduates Version): Lea Michele, Dianna Agron, Naya Rivera, Amber Riley, Mark Salling, Chris Colfer, and Cory Monteith.
Download - right click and save link as
so I decided to make my idea for a Klaine story thing into original fiction. Which will be hard because I lack motivation for original fic sometimes because fanfic is like, immediate gratification. But if I write this OF then I can search for publication maybe or something, and gingerandfair says she loves the idea. lol.
I’m psyched to hear this. I love your writing!
Let me know if I can help. I write too and have some great resources.
Rating: NC-17 total
Pairings: Klaine with side (mostly off screen) Kurt/Adam, Blaine/Sebastian
Summary: Benefits to having a best friend: someone you can talk to about anything, including the hot boy you’re dating, trashy Bravo television, and great sex. At least, that’s what Kurt and Blaine discover when their friendship evolves into friends with benefits. What could be better? AU.
Notes: No heavy Kadam or Seblaine at all the long and the short of it is that I love Klaine and wanted to write them having lots of banter, sex, and learning about each other in new ways. There is no cheating, no angst, no jealousy.
This will be posting every few days (it is complete). Also, song title comes from Jason Derulo’s The Other Side
**yay! It’s done! I have two little cut scenes I might turn into ficlets or one shots — I’m had such a fun time writing this story, I’m not opposed to leaving it behind just yet :D Thank you guys for the incredible response to this story, it means so much to me!**
“Are you okay?” Blaine says softly in the dark.
They’re dressed. Cleaned up and dressed and curled into each other. Kurt knows there is no way Blaine could have missed the tightening of his body or the hiss he’d let out when he had pulled out. They’d distracted each other with fumbling for clothes and giggling when they kept getting each others instead of their own. Comfortable moments punctuated by small kisses; one from Blaine on his shoulder, another Kurt bestowed to his temple.
Kurt had come back from the bathroom really feeling it, sore and disconcertingly open and trying really hard to keep it from Blaine.
“Kurt, really, are you okay?”
It’s always been hard to keep anything from him.
“I’m fine.” Kurt rolls over, out of Blaine’s arms, to face him. “I think it’s supposed to be pretty normal, all things considered.”
“At the end there it was just-” Blaine traces a finger down Kurt’s nose, “hard to stay in control.”
“I didn’t want you in control Blaine,” Kurt whispers the admission, kissing the fingertips that descend to trace his mouth. “I wanted you. Just you, there with me.”
Blaine puts his forehead against Kurt’s.
“I was,” he says so softly Kurt almost doesn’t hear.
I just loved this fic.