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 | Oct 10, 2013 | All About Indiana, All About Me, All of Us, Blogging Life, Giveaway, Indy Geek Girls, The Reluctant Hoosier
I am, without a doubt, a big ol’ fraidy cat.
Growing up (and, admittedly, even today) I can’t watch a scary movie for nothing. I have never, and I mean never-ever-ever, been to a Haunted House before this week.
Then I got an invite to The Children’s Museum’s 50th Anniversary “Time Warp” Haunted House – celebrating 50 years of Haunting the museum.
And I went.
The “50 years of fear” includes the addition of 3-D glasses (which you don’t NEED to enjoy it if 3D’s bother your eyes)…and takes you on a journey through time. You enter through the elevator and the disorientation begins in the tunnel, taking you all the way back to the 1960’s…and the Upside Down Room featured in TCM’s first Haunted Houses. Then it’s onto the 70’s with a creepy basement and then my favorite room of the whole haunted house (see if you can guess what that is from my pictures below). You’ll fly into the 80’s with neon clothes, a horrifying Chucky doll (scared me the mostest) and a pinball room that I’m assured in the scare hours is extra freaky. If you’re a child of the 90’s you’ll be treated to horrific flashbacks of internet dial up tones and “You’ve got mail” while surrounded by cables, wires and reminders of the terrifying reality of Y2k…and the witches take us on a further treat by sending us into the terrifying future 50 years ahead, before finally sending us back to the present.
The Children’s Museum Haunted House is a great treat for any age, especially with the new “Choose Your Scare Options.” Here’s how you can get tickets, choose your scare, then it’s onto the giveaway and pictures!!
General Admission:
$6 @ Marsh Supermarkets
$7 @ the Box Office or Online
XTreme Scream:
$12 @ the Box Office or Online
Light’s On Hours (i.e. Kid and ‘Fraidy-Cat safe):
Wed’s-Sat’s: 10A-3P
Wed’s Oct 16 & 23: 3:30-8:30P
Sun’s: 11A-5P
Halloween: 10A-3P
Frightening Hours:
Thu’s & Fri’s: 3:30-8:30P
Wed, Oct 30: 3:30-8:30P
Sat’s: 3:30-9:30P
Halloween – None
Xtreme Scream (For those looking for an INTENSE psychological scare):
Fridays: 9-11P
Now for the Children’s Museum Giveaway!! I have four, count them, FOUR tickets to giveaway for The Children’s Museum 50th Anniversary Time Warp Haunted House!!
All you have to do to enter is:
1. Leave a comment telling me if you’re a ‘Fraidy-Cat or if you’re braving the Scary Hours (or the XTreme Scream)!!! ~1 entry point
2. Tweet This:
Enter to win 4 tickets to Time Warp: #50YearsofFear Haunted House @TCMIndy from @SadieCass http://bit.ly/1czw45T #Giveaway #Indy
~1 entry Point for the exact copied tweet
3. PIN this post (Pin button above) and leave a comment w/ the link. ~ 1 entry point
The giveaway ends on Monday 10/14 at 9AM. The winner will have 36 hours to get back to me or I’ll choose another winner.
If you want more chances to win (and you know you do) visit the wonderous blogs below:
Hoosier Party Girl
Just Like the Number
Indy With Kids
Now do you want to see some pictures? Because I want to show them! These are not nearly all of the pictures I took, but I wanted to leave you some surprises.
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.
by Sarah | Aug 8, 2013 | All of Us, Crap, Special Needs
Someone recently asked if I carry guilt.
Unwarranted guilt.
Two kids with CF.
One with Autism.
The truth of the matter is…
Yes.
Every day.
Most days I am able to ignore it.
Most days I’m able to ease Erik’s guilt over the wholething.
To continue forward and do what we must do. What we have to do. To live our lives.
Because I love them.
And wish I could take their challenges onto myself.
I try to never let them see it.
Or feel it.
I don’t know that it’s something we’ll ever shake. Or be able to fully let go of. There are risks in the future if they have kids. There are risks in the future of how their lives will turn out.
But I’d feel guiltier if they weren’t happy.
And I believe they are.
I hope they are.
I hope they always will be.
by Sarah | Jul 4, 2013 | All of Us, Holidays, Random
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.
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.”
