by Sarah | Nov 11, 2013 | All About Me, Crap, Random
* My brain is still a pile of mush, and sometimes I can barely focus.
* In the span of four months I’ve gone from not working outside the home, to a part time job, to a full time job I started today.
* I’m still not sure how I feel about that (pretty sure I don’t like it).
* We’ve been having kleptomania issues again.
* I have a book coming out in just a couple weeks and I’m totally unplanned for it.
* My series “completed” back in September and I haven’t had time to crow about it.
* I’ve got a to-do list a mile long and absolutely no time to do any of it.
* The game obsession in my house has reached critical mass. Uno is the big winner, but the kids have been going bonkers.
* It started snowing – and sticking…today. I’m both elated and a little upset by the end of the fall.
* I have a ton of posts planned and just haven’t been able to write them.
* I’m barely hanging on by my nails on this NaBloPoMo thing. This was supposed to help me better my blogging activity…but I’m failing.
by Sarah | Nov 8, 2013 | All of Us, Crap, Random
This week has been an intense, crazy, world-shattering week.
My brain has been blown to bits. My concentration shattered.
Things I can’t discuss have turned everything upside down and sideways.
But in the turmoil have been moments of good that have helped me maintain balance.
An almost 3-hour lunch with a good friend.
A food fight with my kids over dinner.
The beautiful colors in the blanket of leaves covering my yard.
Hours on the phone with my best friend.
Playing Uno (Star Trek Uno, of course) with my kids.
A night out with good friends and more hugs than I even knew I needed.
Small moments of peace amidst the chaos that help me keep my balance.
Small moments of joy.
Sometimes it’s the small moments that get us through.
by Sarah | Nov 6, 2013 | All of Us, Crap, Photography, Random
by Sarah | Nov 5, 2013 | All of Us, Crap, Random, Special Needs
*Otherwise titled “The post in which I piss people off.”
From the time our troubles started, from the time we first realized there was just something ‘off’ about Riley. From the day We realized Angel’s torticollis was more than just a lazy neck and a heavy head. From the day we realized Angel’s cough was going for a month and showed no signs of letting up. From the first time Angel intentionally injured herself. From the first toys Riley lined up. Every day, every night, every in between we are aware. We notice when Angel runs out of steam before she’s played for ten minutes. We notice when Riley is starting to retreat into her shell. When we’re in danger of a meltdown of epic proportions. In danger of a night of a screaming, pouting, angry Riley.
We notice it all.
We see it in the every day.
We see it in the little things.
Every action, every reaction.
It’s a part of our lives. It is our every day.
Then you come along and say “But she looks just fine to me.” Or “She doesn’t seem autistic.” And of course the “She doesn’t act sick.”
I know you mean well. Really, I do.
But I hate it when you say that.
It’s like you’re belittling our every day.
The hours at doctors and specialists. The hours calming and refocusing an over-stimulated child (longest meltdown stands at 36 hours). The hours a day hooked up to machines to live every day. The way I lay awake at night listening to labored breathing. Check temperatures every time we feel a little warm.
I know you don’t mean it this way. I know you just mean to say that despite their troubles they look healthy and happy. That unlike other children with special needs it’s not a visible/noticeable difference.
But I hate it.
Just say they’re beautiful. Say they have a great smile. They look like they’re having a blast.
Don’t contradict what we KNOW. Riley does have autism (no matter how mild). Angel does have CF, and right now she is sick (and we spend every day wondering just how badly it’s holding on).
It is our every day.
We try to live life beyond our labels – and we only succeed by accepting them and integrating what they mean into our lives.
*~*
*This post is a re-post from a couple of years ago. It’s still very relevant to us today.
by Sarah | Aug 22, 2013 | All About Denver, All About Learning, Crap, Random
*Otherwise known as: I’ve gone the way of the dinosaurs.
First day of school always brings a mass of paperwork home (as does the last).
Forms to be signed. Permissions granted.
This time around Denver brought home a form to be signed and said he needed a 1G flash drive for a class.
“It’s for Mass Media.”
I was stymied for a moment, I mean I know what mass media is, but what?
Then I read the form. It dawned on me, “Oh, it’s journalism.”
“No, Mom. It’s not journalism anymore, it used to be, once upon a time.“
*Sidebar: I’ve gone the way of “Once Upon a Time.” Woe is me.
His first assignment?
A photo collage video.
Any subject he wants.
I’m proud to say he picked CF.
I think once the assignment is in and done you can expect a show and tell here.
by Sarah | Aug 16, 2013 | All About Denver, Crap, Cystic Fibrosis, Special Needs
It’s the third day of school.
1…2…3.
This morning I made the first sick call of the year.
In fairness, it’s been coming on for over a week.
Denver hasn’t been well.
We were told to keep an eye on it, and we have. For a few days we thought he might be doing better.
Not so much.
He has yet to attend a cross country practice (and he LOVES XC)
After school yesterday the kid slept.
And slept.
And his fever returned to spike up before dropping again.
So he gets to go in for a sick appointment today (it was that or the ER).
Where we go from here is an unknown.
Hopefully it’s home with meds…and not another stay.
Hopefully.
* My brain is still a pile of mush, and sometimes I can barely focus.
