Dead would be nice
About six months ago someone at school asked me if I wanted Pearlsky to participate in graduation. She is turning 22 in October so school ends for her then. Technically I guess this would be her graduation. Note that she cannot “graduate” since she did not pass the No Child Left Behind mandatory state test, she will not get a diploma, it is all a farce. I said we would attend, she would not participate.
Nothing for six months.
Last Wednesday, four days ago, I got an email from the director of special education, “Just to be sure, Pearlsky will not be participating in graduation, correct?” I responded with “Correct. When and where is it since we will be there.”
Ummmm … in four days. Do you want tickets? Special seating?
And I wasn’t told … why?
It is a very warm and sticky day; we walk there. The graduation is on the field. We arrive as the other graduates are walking onto the field. She is supposed to be among them. Walking. Laughing with friends.
Fuck.
Pushing her chair is not so easy on the field, but we move around a bit.
She is supposed to be wearing a cap and gown. Walking with her peers. Talking, laughing.
Instead, we are hanging out in the back, walking along the side, well, I am walking, make that pushing, she is riding, bumping along.
There is one guy in the special education administration that I am, well, not too fond of. He has messed up too many times, and I would not allow him to deal with an IEP for my hamster, if I had one, let alone Pearlsky.
He walked over to us at graduation, and asked if it was ok to give Pearlsky a tassel. No one else bothered to say anything, offer anything, nor interact. But he did. And you know what? He did something right.
At some point one of the speakers said “Will all of the graduates of 2014 please rise.”
Fuck you.
It hits you out of nowhere. You think all will be ok, at this point you can handle anything. Bullshit. Like an unexpected left hook, life just crashes.
I’ll trade you one crippled retard for a dope smoking pregnant teen. How about for a drop out on probation? A middle of the road B student going to a good state school? Yeah, I’ll trade you. How about for a kid that can stand?
And no, it’s not about losing or leaving Pearlsky or David nor not wanting them nor not loving what I have, what they are, and if you think that is what it is about, well fuck you too.
I will die never having seen my child get a diploma. Lots of people die in that situation. It was not my plan. Not my hope. Not my dream. I will never walk my daughter down the isle. Never be proud of her accomplishment. I use the singular for a reason, seeing that so far there is not even one.
Want to talk about graduations? Here is an interesting link, but first a definition:
gulag: “… a system of labor camps maintained in the former Soviet Union from 1930 to 1955 in which many people died.” Got that? Many people died. Forced labor camps. Consisted of many more camps with many more prisoners over many more years than the Nazi concentration camp system did.
Personally, to see my child walk in a graduation, laugh with friends, they can put me in a cage hanging from the ceiling. But that’s me. What do I know? Here is that link.
Oh I hear you….there’s a song by I don’t know who, that was popular the year Ana was diagnosed I hope you dance. Needless to say I hate that fucking song! I hated Dora the explorer when she wanted everyone to clap their hands! I hate every Sunday at my church when they call ALL the children/teens up to the alter, and a herd go running past my Ana! I hear you SD it’s a knife in the heart, no matter if you see it coming or not. Thank you for again making me feel like I’m not alone with my crazy thoughts!
I have an 18 year old with 3 kids (one of which is 5] and a bi-polar 20 year old who has been to rehab twice. I don’t pretend to know what you go through, but I am one of yoir biggest fans. I can only wish that my kids could have had a father like you…..
As always, much love to you and Pearlsky.
My daughter is severely disabled. She is only 14 months old but it KILLS me to be around other people, especially kids, especially little girls. I just stay home, try to create some joy in a bubble. Everyone says it gets better, easier. Doesn’t sound like it does.
Does it get better? Easier? Yes and no. It hurts every day when I walk into the high school and see who (or what?) my daughter “should have been” … “could have been.” But it does get easier. Maybe you get used to it. One cannot live in that bubble forever. It will get different and you will rise to the occasion and learn how best to deal with it. There really is not much choice.
I think for me the baby phase was hardest, you get used to it, the bitterness fades and you change your dreams, but moments still sting especially when your caught off guard, or you think you have it all together. My girl is 15 I still dream of her getting out of that chair & running away from me…..seeing the back of her I would love that.
I agree with Ivy and SD. The baby phase was the hardest. My daughter is also severely disabled and is now 3. The first two years of her life were much harder that the past year has been.
During the first two years, everything was new and crappy. My daughter showed very little personality. She barely smiled or showed any recognition, and I wondered if she would ever really understand who I was.
Over the past year, we have seen her little personality emerge. She squeals with delight at Disney’s Tangled and fake-cries at the part in the movie where the mean mom gets angry at Rapunzel. She smiles when we give her kisses and wrinkles her nose, like she thinks it’s funny.
I’ve grown used to the fact that she will never walk or behave like a typical child, and I’ve started to embrace the things that make her who she is–the way she stretches her legs, the way she rubs her face, etc. I’ve tried to find activities that she would enjoy and focus on exposing her to as many of those as I can. (Disney on Ice, the zoo, the community swimming pool, etc.)
So, yes, it gets better and easier in a lot of ways.
I like the new design changes. Looks less like shit.
Man…the sense of overall frustration. What a mind-job. And the strange irony of people who never come through who suddenly do when you least expect them to. It’s interesting because I was asking myself the question about, no scratch that…I was telling myself the statement about ‘It never really ends, does it?’ when I had scrolled down to the comments section after coming back from reading the post from Bill that you linked to.
Your answer about does it get easier, the yes and the no, prompted me to ask a question. But then I realized it is so multi-faceted and complex that I didn’t even understand the question. SO I need to think about it. I, of course, could have said nothing at all, but then…we have to be true to ourselves, don’t we?
But I do want to share one crazy thought and a simpler question. I can’t stand it when I see Bennett surrounded by all the typical kids when he was at the NORMAL Kindergarten last year. I can’t stand it when I see Bennett surrounded by all the disabled kids now that he is back at a special school. That makes me bat-shit crazy, right?
Oh…and if you need someone to mess around with your header image, like graphics and junk, I do that. Would be happy to. Could rebuild something from scratch to look a lot like what you have, or go in any new direction. I’d leave that up to your direction. But my skills are at your service.
That header is FUCKING AWESOME!!!! I love it!
Did you do that by yourself or did you get help? Damn dude, you have some skills.
Why does everyone use the words “get help” around me … ? LOL
Yeah, I fell in love with it when I saw it … http://www.dollarphotoclub.com/
I thought Dollar Photo Club was some movie about some dude with AIDS who got illegal drugs from Mexico, Had no idea it was a website with header pictures. Learn something new every day!
I like the new layout – and I have missed “seeing” you! I would say life blew up and kept me away but in reality everything is just another speedbump. I hope your summer is better now that Perksky is out of that loony toons school.
“We are both back. Scary, no?” Scary, yes! (in a good way of course).
Hey there. I know that feeling when you realize that everything you hoped for and someone hid away just comes crashing out like a raging bull… It isn’t fair… I have those days… too often… where I look back and have no idea how I’ve made it this far. No idea.
Life doesn’t seem to be fair for some… for many… you’re not alone… (yet we all are)…