Friday, June 20, 2014

the way that autism sometimes hurts.

"people with autism don't care about social interaction."

this was one of the earliest lies we were told when bekah was diagnosed seventeen years ago.or maybe misinformation would be a better word. right away was that myth, that she'd always live in her own world separate from us. that she would probably never seek us out and never love us the way that we loved her. affection? we were pretty much told to forget it. it was something we'd likely never see.

the way it was all described sounded as if, at least among anything else, rebekah would never feel lonely. she'd be isolated, but not lonely. it took me a long time to understand that idea before i could draw any comfort from it. and by the time i could have, i understood that it was completely and totally bunk.

my sister is one of the most affectionate people alive. meet her, and if you don't treat her like some kind of alien, she will probably love you faster than just about anyone else you know. she is ALWAYS trying to kiss people, say hello, and get attention. and even though crowds can be quickly overwhelming for her, she LOVES to go to public places like the park and the mall to be with other people. when school is out for the summer, she asks about her friends there.

and here is the part that lately, has begun to hurt.

bekah IS lonely sometimes. being out of school and not at her regular summer camp has been hard for her. every day, she asks me about "summer programs" and friends she misses. she asks about aides that have worked with her from past to present. when i take her places, i see her watching kids around her with a certain look in her eyes that breaks my heart. she wants so badly to be a part of certain things. she wants to have more friends. i spend hours each day with her, hanging out and going places. we are not just sisters, but friends. but i've realized lately, i cannot be everything to her. there is a need inside of her for friends outside of our family. there is a want to be a part of things.

there is a certain kind of loneliness.

this has been eating at me lately. i feel powerless to truly understand 100% how deep that loneliness goes. maybe it's not as much as i think it is, maybe it's worse. i can't know for sure. what i do know is, i hurt for her more than i've ever hurt for myself when i think about her being lonely or feeling like she's missing out.

i love bekah so much, every aspect of who she is. but if i could take this ONE thing, loneliness, away...i would.

Friday, June 6, 2014

just the chance

dear healthy people,


do i need to repeat that? how about you just read it twice. until you get it. then, resolve to do more of the things you can so easily do that are impossible for those of us who are sick. go live that life that i would love to be living, and am trying really hard to not feel bitter about.

my problem is, i'm in love with life. and i see people living the life i want so badly. people who don't even deserve it, sometimes, is how i feel. and i hate thoughts like that. i don't want to be the person that thinks that way.

most of all, though, i don't want to be "the sick girl". it is not the role i want to play. I AM SO MUCH MORE THAN THAT. i don't want to be the girl who sees the adventures everybody else is having on her Facebook newsfeed, while i'm doing nothing but being sick and sick and more sick. i want more than anything to work full-time with my boys and bekah. i want to be hiking and camping and mountain biking and climbing. i want to go on road trips, and work three different jobs so i can actually afford to live. i want the life that everyone around me seems to have. i'm just starting to wonder if, there are some things i really might never have. before i got sick, i NEVER allowed myself to view something as unachievable to me. but my will is trumped so often by the weakness of my body, and i'm realizing more and more that that's how it is. for now, and it's looking like maybe always.

this isn't how i planned it. this isn't what i want. i want life so much it makes me ache.

i don't want to miss out on any more than i already have. i have so much in me beyond just being the sick girl over in the corner. i just want a chance at it.

Monday, June 2, 2014

no, no and NO.