I wanted to post a feel good, happy, upbeat post tonight. I really did. But I post how I feel. And I feel spent tonight. Today was one of the hardest days that I've had in the past few months.
I feel guilty for the way I feel, like I have no right to my feelings today. So many families woke up this morning, forever different, forever changed because of one moment in time yesterday. One moment, a split second. Lives are lost. Limbs are lost. Bodies and minds are scarred with images no one should ever see.
And here I am this evening... crying my eyes out. For who? For Vicki and for me. I'm selfish. I'm selfish and I know it. (Da-ta-da-da- da- da-- te-da) wiggle, wiggle, wiggle, wiggle, wiggle, wiggle, yeah. (sorry, I've been so upset all day, I need to make myself laugh sometimes. And, boy, I am hilarious. :)
I hate autism. There. I hate autism. I really do.
Autism. You suck. Autism you suck the life out of me, you suck the happy out of me, you suck the money out of me, you suck the time out of me. You just plain suck.
Eh. I feel a little better.
I know I've said it before, everyone who deals with autism says it, but autism is like a roller coaster... up and down and up and down. It knocks me for a loop. And because I don't particularly like roller coasters anymore, I feel sick just talking about this. We are chugging along, creaking up that big hill... anticipation growing... bracing ourselves for the fall we know is coming. And then we are at the top. Might as well just throw our hands up in the air and scream. Because the fall is so hard and so fast it makes my stomach lurch. There's nothing you can do to stop it though. One the ride starts, that's it. You have to stay on it.
I know I'm being very cliche and very vague. Some things that happened today I just don't have the strength to get into and I don't really want to. Maybe it was just that so many little things (and big things) happened today. I am just overwhelmed right now, at this moment in time.
For instance, I'll share a few of the little things... this morning when I went to get Vicki up for school, she had peed in her diaper again, a lot, which like I said hasn't been all that unusual as of late... but, still, it doesn't start the day out great when I have to wash sheets at 7:30 in the morning. (And I try to be positive... and grateful... that it was only pee on the sheets. And that it was 7:30 and not 3:30 in the morning... right? I am. I am grateful for that. But still, autism. You suck.)
Then as I am taking the sheets off the bed, I see a small piece of plastic by Vicki's pillow, it's very sharp too... I pick it up and wonder about it all day long. Where did it come from? (And yes, here I am grateful too... I am grateful that Vicki didn't put that in her mouth and get it stuck. I can't imagine the damage it could have done. And I am thankful she didn't cut herself with it.) But, where did it come from? I finally solved that mystery tonight as we were putting Vicki to bed. We had to change the electrical outlets in her room years ago... we couldn't have them down low, so we got covers for the outlets and ran the outlets up to the tops of her walls... There is a plastic outlet cover screwed into the wall by her bed... and when she lays (rather jumps, slides, plops loudly) into her bed at night, the whole bed moves. So last night the bed must have moved just so... so that it cracked a sliver off the side of the plate. Little things...
Then today I see the school's dreaded number on my cell phone. My heart always drops into my stomach when I see that... and today rightly so... I won't go into details tonight... but Vicki had some behavioral issues that we need to address, again. More meetings. More talking. Sigh. Autism you suck.
And then after school... the walking that we've worked so hard to bring back... that we just started succeeding with. That we were just feeling comfortable again with. 1:1 walking around the neighborhood with Vicki. Seems like such a simple task. Let me tell you, it is not. And today, well, it was not pretty. She dropped to the ground 3x today. And if Vicki doesn't want to get up, Vicki won't get up. And it is scary. By the side of a road. Just hoping and praying that Vicki will stand up and start moving again. It wasn't even me that had her on the walk today, yet when Vicki's aide texted me, I started shaking like it was me. Autism you suck.
Autism scares the shit out of me. And oh, yeah, Vicki had another poop accident tonight. Autism you suck.
None of these instances, in isolation, would necessarily make or break a day. Well, maybe... some of the behaviors that I didn't really get into would, and have. But put all of these together, and what do you have? One very tired and broken mommy tonight. And the icing on the cupcake? I was sitting on the couch with Vicki trying to catch my breath and I was doing some light reading. triennial testing results for Vicki. I think that I am above reading test results and scores. I know that these standardized tests don't measure who Vicki is or what she is capable of. But it still doesn't make seeing it in print any less painful. That packet of paper is no more Vicki than some of the behaviors she demonstrated today. That was autism. And oh yeah, autism you suck.
Oh, but wait... here's what put me over the edge tonight--- when the tears started flowing too freely. As I was sitting beside Vicki, I gently started rubbing the top of her back and the back of her neck. And then I realized, I don't feel Vicki's necklace. I know I've mentioned Vicki's necklace on my facebook page... but she got it as a gift from Ally right before Valentine's Day. And she has worn it every day since then. She loves that necklace. The half of the magnetic heart that says 'Big Sis' on it. And Ally has the other half that has 'Lil Sis'. Vicki's necklace is gone. And when Vicki realized it, she looked up and me sadly and said, 'heart necklace. Ally. Big Sis' And I started crying. I retraced her steps on her abbreviated walk today. Joey took me. And he held my hand and gave it a squeeze. And he said, 'Don't worry mom. I'll buy a new one for her.' And it made me cry even more.
And I cried today in the car, after school... I made Ally late for her gymnastics class because I was uncomfortable leaving Vicki and her aide alone.. And Ally sat quietly on the chair and waited and when we got in the car and got to gymnastics 10 minutes late, she said 'That's ok mom..I understand.'
Autism. You S.U.C.K.
Gee. I thought that bitching and moaning about autism would make me feel better. It didn't.
And I think I know why. Because. Because I didn't appreciate the fact that Joey doesn't suck. And Ally doesn't suck. And Vicki. My beautiful Vicki. She doesn't suck. Autism might, but Vicki doesn't.
I can't let today go without checking off a few boxes on Vicki's-Did-It List. Especially today. Vicki wore a new bra to school !!! Woo hoo!!! Go Vicki! Not a sports bra, but a real snap in the back bra!
And Vicki asked to pee in the potty 2x on her own today. Woo hoo! Go Vicki! And Vicki said 'ouch. hurt.' as I was combing her hair this morning. Woo hoo! (not that it hurt! but that she verbalized it!) Woo hoo! Go Vicki!
There. Now I feel a little better.
So, if you would tonight... please say a short little prayer for Vicki. That tomorrow is a better day. And that when she doesn't have her necklace in the morning to put on.. that she is ok with that. And that that one moment in time doesn't define her tomorrow.
Thanks for listening. I know it wasn't pretty. I think it kind of sucked. xoxo
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