E is for Edna @eisforedna - Tumblr Blog

Happy Birthday, Edna!

Edna turned 34 on Sunday. I was out of town for work and her caregivers, Magda and Rosa, sent me this photo. <3

A stranger and her daughter just bought Edna a gift at Barnes & Noble. They had been staring at us- I thought because Edna was shouting "Barney! Barney!" but then the woman hands me a $20 and says, "Buy her a book! Merry Christmas." When I tried to refuse, she handed it back to me and said, "I do it for my family. Do it for someone else some day." Then, she and her daughter said "Merry Christmas" and walked away. Edna went with the Ernie doll and Sesame Street book.

#bawling #merrychristmas #kindness

Happy Thanksgiving from these two turkeys.

A Walk in the Park

I try to see Edna once, sometimes twice, a weekend. We go for walks at the park or to the mall where they have air conditioning in more than one room, and always to eat. We love to eat (as evidenced by my chin in the below picture.)

But every time I drop her back at her group home, I can’t help but feel like I am failing her. That I’m still not doing enough. Staying on top of it enough. Not calling enough during the week. My therapist said that the guilt is something that will always be there. Thanks, therapist for your hopeful words of wisdom. It’s like the time my aunt said, “Your mom is dead. Get over it.” Which is, you know, totally appropriate.

I guess I’ve always thought that if I worked hard enough and made enough money, I could take care of Edna exactly as she needs to be taken care of. I could buy her all the burritos and she could just be happy. But now, I’m not so sure that money is - or will ever be - the answer. I think love is the answer and appreciating the fleeting moments of happiness. But sometimes that doesn’t feel like enough. Someone asked me recently (a Tinder messenger of all people) what makes me happy and I didn’t answer because I think it’s a very personal question and I didn’t know him from a sack of potatoes or whatever. But honestly, what makes me happy is seeing my sister happy. Making her laugh. Making sure she’s walking instead of sitting in her wheelchair. Making sure her regular lady at Supercuts is working so her hair doesn’t get cut all wonky-like as evidenced in the below picture.

And when she’s not happy, that makes me sad. It makes me feel responsible. One time another therapist told me that’s co-dependency, but she also didn’t wear shoes in our meetings and I think that’s called unprofessional. Her feet didn’t smell or anything, but still. Don’t give me advice about life with your toes out. Anyway, I think this is just part of life. Sometimes it’s a walk in the park and sometimes it isn’t.

Happiest of birthdays to my greatest love, Edna Mae! 🎈🎉

Donuts? Check. Chocolate milk? Check. Two tickets to Disneyland for Edna's early birthday celebration? Check! 💕

“Just Pooh”

After months and months of paperwork and meetings with the self-help court, I am officially Edna's legal conservator in the State of California. This is us post celebratory-cookie outside the courthouse.

I look like a haggard mess because I started crying after the judge said “ok.” I didn’t expect to cry, but then again I never do. I couldn’t even pull it together enough to say “Thank you,” after the judge asked, “Is there anything you’d like to add?” I just shook my head and tried to smile.

Meanwhile, Edna was shouting, “Just Pooh! Just Pooh!” because I had pulled up pictures of Pooh on my phone. Or maybe she was trying to tell the judge that she wants Pooh to be her conservator - who knows. Either way, I’m glad the judge chose me over Pooh.

Walking at the park with E! (After our french fries and milkshakes.)

Rainbows & Butterflies

I wrote this the day after Christmas and never posted it because I thought it sounded sad and cynical. But it’s not like I’m on some mission to pretend that life is all rainbows and butterflies, either. Three months later, I still feel all of these things, whether I want to or not.

December 26, 2014

Took Edna home late tonight. We had pizza, ice cream and cookies for dinner. Then we went to Candy Cane Lane to look at the Christmas lights. I wish that that were enough to take the guilt away. The guilt of dropping her off at her group home. The guilt of not being able to give her everything. The guilt that no matter what I do, will never go away. As much as I wish we wouldn't have lost Gaby last year, I am glad that Edna is closer to me now. I see her so much more than I did when she was in Arizona. And honestly, she seems happier. She has friends at her home and when we hang out, we're having fun. It's not just a matter of getting by. So yes, the guilt is something I have to live with. But I also get to see her smile.

I feel guilty when I leave her because I feel like something is missing. When we are together, I feel complete in that I feel like I'm doing what I should be doing: taking care of a person I love. A person who loves me, too. Even though I sing in front of her and sometimes fart in the car and don’t bother to roll the windows down. Sorry, Edna.

I don't really like Christmas that much. It makes me sad. And I know it's Jesus' birthday or whatever, but I haven't felt close to Jesus in a while and then there's consumerism and someone probably died at Walmart today so someone else could feel “loved.”

Christmas makes me sad because it heightens the loneliness. I miss so many people that will never come back. It is a permanent sadness, despite all of the good. That's life, I guess: a little bit sad, a little bit good, and then there's cheese and chocolate.

I know I'm not just sailing alone on a ship called Woe. Or maybe I am. Maybe we all are, in a way. Until we sink. Or until we all wish each other a Happy New Year... hoping that it is, knowing that it won't be, but trying anyway.

Abuelita

Tonight I took Edna to a Mexican cantina for dinner. A loud mariachi band took the stage shortly after our arrival. Edna gave them the stink eye, but cheered up once we got our chips and salsa. Midway through our meal, an older Hispanic woman and her daughter and granddaughter sat down next to us. Edna was smiling at them. At first I thought she might bother them. Edna likes to stare sometimes. But the older woman smiled and waved and said to me, "I think she likes the music!" Ha. If only she could have seen her a few minutes prior.

I came to learn that her name was Rosa. And her grandson, who was back at home, has Down Syndrome.

"He gets mad at me when he's hungry," she explained.

"But then I say, 'If I give you ice cream, will you eat your dinner?' And he says, 'Yes.' Sometimes if he gives me a hard time, he will say, 'I'm sorry, Abuelita.'" She smiled."That's what he calls me."

She could tell I didn't pay attention in Spanish class, I guess. Then she took my hand.

"It is difficult, but not impossible. Right?"

I nodded, my eyes all watery for some reason.

Happiness Will Find You

Even after Edna moved out, I continued to sleep on the sofa. You’d think that after nine months, I’d be happy to have my bedroom back. My bed, my pillows, my sleep. But it didn’t feel like mine anymore.

My bedroom was where she had slept for nine months. Where she refused to get up in the morning, where she once stood on the bed, calling out the window, “Jeanie! Jeanie!” even though I was right behind her, begging her to get down.

As much as I wanted to find a good home for Edna, I wasn’t ready once I found it. I didn’t know what to do with myself. I was overwhelmed with guilt and worry. How was she doing? Were they treating her well? Was she making friends? Was she walking enough? Was she going to the bathroom regularly? Was she scared? Was she lonely? Did she like the food?

(The last one I didn’t worry about too much - Edna eats everything. Sisters, we are.)

Mostly I wondered if she missed me. I missed her.

So, I visited. Almost every day for the first two weeks. Sometimes twice a day. So much, that the house manager pulled me aside and asked if I was doing okay.

“We’re worried about you, she said. “Are you having any fun?”

“No, I am a fucking mess,” I wanted to reply. "I can’t sleep, I can’t eat (lie), I’m terrified. I want to pack up her things and take her back home.”

But I couldn’t. I knew I had made the right decision. For her, for me. For us. I wish I had a million dollars to build her a guesthouse on my delusional ocean front property and for her to have round the clock care and for me to be Mrs. Channing Tatum, but that’s not happening. At least, not right now.

For now, Edna has her home and I have mine, and after a couple of weeks of sleeping on my sofa, I moved back into my bedroom. My sweet friend gave me a new bed and I bought new sheets and candles and hung some new prints on my wall, one of which reads, "Happiness Will Find You."

And it has, like the other day, when I picked up Edna and took her to In & Out, and on the way back to her place, I rolled down the windows. And it was beautiful out… the sun was setting and the breeze was perfect… and she was laughing.

And then we got to her home, she refused to go inside and threw herself on the ground and the staff had to help me pick her up and wheel her inside, where she started crying.

And as hard as it was to leave her even though she was throwing a fit, I did. I’ll see her again this weekend and for right now, that’s the best I can do.

A New Day

Yesterday was Edna's first day of her new day program, so I went to her house to see her off. I brought her a donut, suspecting that they would have trouble getting her into the car. Ten minutes before I'm supposed to be there, my phone rings. "Hi Jeanie, are you coming? Edna is in the car ready to go."

When I pulled up, Edna in fact, ready to go. She was sitting in the passenger seat, wearing her pink sunglasses and smiling. Though my original plan had been to follow them to wherever they were going (no joke), I realized it wasn't necessary - not to mention slightly nuts.

Today, instead of driving there to see her off, I called. The house manager told me Edna had already left for the day. Apparently, she couldn't wait to go and hugged the caregiver when she picked her up! They said she was even checking the backseat to make sure her backpack was in the car. Ha!

With all we've been through, it's hard not to think that this is all too good to be true. But sometimes, things are good and true and there's no point in questioning it.

Bread & Therapy

I've heard that people who can afford maids (lucky them) often tidy up their house before the maid arrives. As not to embarrass themselves, I guess.

I never really understood that until today, when I sat in my car and cried before my therapy appointment. I was in a residential neighborhood, too, which must have been really comforting to the person whose house I parked in front of.

"A lady just pulled up. She's wearing exercise clothes - ironically, it appears - and she's crying. Make that sobbing - oh yeah, she's sobbing."

To avoid having the police called on me, I pulled it together, and went to see my therapist, who I haven't seen since January. (I had been seeing another therapist on campus, but after she told me she felt helpless, I knew she wasn't for me.)

Anyway, I sobbed outside of a stranger's house today because I needed to. For the past nine months, I've held it together, sort of, kind of, not really. I've been in survival mode. Barely sleeping at night, waking up early to feed, bathe, and dress Edna before class, coordinating babysitters, trying to figure out how I was going to pay the babysitters... fighting the state to provide services that she is entitled to but they refused until I got an attorney involved - all while writing scripts, working on campus and trying to be a functioning human being.

And holy moly shit balls, I don't know how I'm still standing. (I'm not. I'm actually sitting on the floor in my exercise clothes, which have yet to serve their purpose.)

Tomorrow, it will be one week since Edna moved into her group home. It's close to me, it's clean and the caregivers are actually caring. The best part is - Edna seems to be adjusting really well.

Edna outside of her new home.

I, on the other hand, am a mess. I ate an entire loaf of bread for dinner last night, if that's any indication.

I didn't even cut it. I just pulled it apart like a cavewoman. "Nom nom nom, single forever."

I can't sleep at night, I feel like I need to visit her every day and bring her presents each time I see her. Yesterday, she got a new pair of shoes... today, a picture of me. She was impressed with neither.

I'm overwhelmed with guilt and sadness and worry. Which is normal, according to my therapist. She might not have said the same, had I told her about the whole "sobbing in front of a stranger's house" thing.

Getting used to Edna being under someone else's care for most of the time will be difficult. But, I'm not in this alone anymore. I have help. And for that, I am grateful. I'm still scared and worried and feeling all of the things that one would in this situation, but I will get through it. Not today, not tomorrow, but someday. With the help of a lot of bread and therapy, I'm guessing.

Ron & Scott to the Rescue

The other day, I took Edna to the beach.

She wasn't too sure about it. But, she walked around nonetheless.

That bird's all, "Good for you, Edna!" (How that bird knows her name, I do not know. Creepy little fellow, that one.)

Worried Edna's mood might change suddenly (as it often does), we went back up to the boardwalk, where I continued to push her wheelchair.

That's when I heard a lifeguard shout to us from a rooftop. "Hey!"

Fearing I might be in trouble for unknowingly dropping a Cheeto - sometimes they stick to my yoga pants - I nervously replied, "Hi?"

It turned out to be a super cute, tan, big-armed lifeguard named Ron. He wanted us to know that if we wanted to go back down to the beach, he had a cool chair we could use. So, we did.

Edna was ecstatic.

Actually, she really did like it.

She especially liked when I pushed it in the water. Don't worry - Ron said it was cool.

"Just don't submerge it," he warned.

Ron, I may have Cheetos sticking to my wanna-be exercise pants, but I think I know not to let my sister float away into the ocean.

Anyway, it was a really special day.

Anyone who knows me knows the beach is my absolute favorite place in the world and to be able to share that with Edna in a new way was really awesome. And it happened all because a cool dude named Ron was kind enough to let us know about the chair.

Which, actually turned out to be really hard to push uphill... that's when a second lifeguard named Scott helped us out.

Edna thought that was real hilarious. Thank you, Ron & Scott. You made our day!

Watch out, Future.

A week from today, Edna will be moving to her new home, not far from me. I called the manager of the group home to find out if I could put Winnie the Pooh peel and stick decals on the walls... then realized mid-way through our conversation, that wasn't really why I was calling. I just wanted to hear her voice and confirm again that she is a nice person and that I can trust her with my sister.

Quite frankly, I'm terrified and emotional, yet excited for what the future holds for both Edna and myself. I can say, though, that the only thing that has gotten me through this and will get me through this, is by sharing what's been happening for the past nine months and having the support of those close and far away. I appreciate everyone's support and also this odd little box that has weirdly served as the therapist I no longer had the time to see. She was a dope, anyway.

"I feel so helpless," she once told me.

Clearly, she needed to eat some cake and search for a more appropriate profession. Even as I say that, though... maybe that was her way of showing empathy. I felt helpless, too. What I think was most helpful, was just hearing "you can do it" and "you will get through this," because even though I didn't believe it at times, it was comforting to know that other people did.

I truly believe that encouragement is the best give you can give anyone, in any circumstance. I only hope that I can give back what has been given to me, because it many ways, it saved me. It made the days a little more bearable, a little less lonely, and I didn't have to drink as much $2 wine as I probably would have, had I decided I could do this completely on my own. No one does anything on their own, ever. I don't know if this group home will work out - it might not - but I feel like I've made it over a fucking hill that I would rather not have climbed. But now that we are on somewhat solid ground, it's a hill that in the end, made Edna and I closer, forced me to learn how to ask for help, and to never, ever, take no for an answer - if what you're asking for, you believe in your heart to be only right.

So, watch out, Future. We're comin' for ya.

Edna and I at the beach yesterday. (Don't worry, Future, I will bring my makeup.)

This is very similar to what Edna has (Lennox-Gastaut syndrome.) She also developed normally until about the age of three. I found a cassette tape of our mom doing our ABC's with us when we were little and she was speaking better than she does now. Awareness and research is key. Please help this family by watching & sharing the video!

Watching TV with Edna. Wheel of Fortune was over and she was pissed. (So I turned on Barney for her... and opened a bottle of wine for me.)

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