by Sarah | May 20, 2011 | Random
*A repost from a couple of years ago. After recent events and my 13 year old being diagnosed w/ CF I felt it merited repeating.
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.
Now when we look back on a past of frequent bouts of pneumonia. The five years of ‘asthma’ that we have been coping with. When every cough, sniffle and clogged, mucousy throat causes panic in Brandon. When we remember the first three years of his life, the issues he had that no doctor could diagnose for us. The tests he was put through to find the answers that never came – until 11 years later when I remembered. When I put the bouts of lung issues together with the bowel issues of youth and asked for the test that changed it all.
We notice it all.
We see it in the every day.
We see it in the little things.
Every action, every reaction.
Every thought, every moment searches for the newest sign.
Every memory now is seen through new lenses.
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.” The newest, “I just can’t believe that HE has CF. I don’t believe it. Are they sure?” And of course the “She/He 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 days 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 ‘normal’. 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 Brandon also has it. These are not falsehoods. They are not bad nightmares we will wake up from. They are our truth.
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 – not by denying them.
by Sarah | May 15, 2011 | Photography, Weekly Winners
All taken w/ Canon Rebel XS.
For one night we got to keep a gorgeous beauty in our garage as a favor for our neighbor. Very few cars bring to mind the famous lines from “Grease”…but this car did for me. You are supreme, the chicks’ll…
Rear View
Lights On You
The Horse
GT
Hind Quarters
Details
Shining Back
The Star of the Show
You can find more pictures over at my flickr account.
That’s all for this week. Head on over to Lotus‘ digs to see more!!
by Sarah | May 11, 2011 | All About Me, Crap
The past couple of months in our house have been, for lack of a better word, muted. My blog has lacked life because I sort of have. For the second time in less than a year I’ve found myself struggling for air. I don’t like the recurring theme of the feeling.
I’ve mentioned in recent months my regular struggle with isolating, disappearing into my head. Then I’ve turned around and done that (once again to my husband’s disappointment).
I’ve mentioned in passing once or twice my husband’s struggle with depression, and the recent months have been bad for him too.
Maybe it’s the winter that’s refused to let go until suddenly turning into 80 degree weather. Maybe it’s the constant fluctuation of health news in our house. Maybe it’s realizing that our kids are growing up faster than we feel capable of.
I’ve been playing with perking up. Getting my cute shoes recently & wearing them when I go out to feel perky. I’ve taken a recent foray into playing with fingernail polish (my current color is a bright, cheerful orange). Today I dug out my camera in hopes that maybe using it it again will help too. Today I’m writing a blog post for the first time in weeks. Little steps. Once again trying to unbury from the pile of crap that is my current funk.
Then this morning I was catching up on one of my favorite TV series, House. As I watched, distracted by other things, half paying attention…one statement pulled my attention back. Thirteen (yay, she’s back!) was talking about happiness…and her comment was:
“Our level of happiness is set. It’s in our DNA.”
It’s an incredibly cynical view.
But is it right?
Are we pre-destined to be happy or miserable by our DNA?
I’ve often wondered, throughout my whole life, how I can feel so different. So very…”un”. That people seem to sense it before we’ve finished being introduced (or is that paranoia?). And yet my brother, very clearly of the same genetic pool as I am…can be one of those magical people that draws everyone to them. That is the center of attention. That is popular. Happy. Confident.
Nature vs. nurture.
Can we literally blame our parents for creating a genetic cess pool that became us? Or does life mold us into something that becomes set in stone at a certain age?
Am I destined to live with my available level of happiness no matter what I do to fix it? Is my husband destined into a world where not even the most modern of medicines can help him cope w/ sometimes disabling levels of depression?
Are we truly limited in our happy?
by Sarah | Apr 21, 2011 | All About Kennedy, All About Molly
Six years and 2 days ago I was lying in a hospital bed staring at the TV waiting for the smoke at the Vatican to change…oh, and for the stupid Pitocin to make a lick of difference in my labor. I was 38 weeks, but as Riley had stopped growing at 34 weeks, the doctor thought we should get the IUGR baby out and kicking. At 5PM it really started to hurt. By 7:30PM my little princess Riley pushed herself out without making me work a bit for it.
Five years ago at this very minute I was walking with Riley and Brandon to Dairy Queen. At 36 weeks pregnant I was trying to kick start labor. Ordinarily I wouldn’t at that early, but Angel had tried to come almost a week before and the doctor had made her stop…and once I was 36 weeks I was given the all-clear. My body was tired. Bed rest was getting really old…so we took a walk. 2 miles there, 2 miles back. By 4PM labor finally kicked in, at 11:33PM Angel joined us.
I didn’t know the crazy, curvy hectic road ahead of us.
I thought I’d never sleep through the night again.
I wanted to hold my tiny little baby girls forever.
I blinked, though.
In that blink they turned into little girls.
Smart, beautiful, happy, crazy, obnoxious, witty, loving little girls that fill our lives with laughter and chaos and so much love.
In the fall Angel starts Kindergarten and Riley will move onto first grade.
I’m afraid to blink again.
I want to sit and stare until my eyes go dry. Capture every moment and lock it up tight.
Happy birthday to both of my little girls.
Stop growing up now.
Please?
by Sarah | Apr 18, 2011 | Crap, Random
Oh, hai…I have a blog? Well gee…time to pull my head out of the clouds and use it, I suppose. There are birthdays this week, and so much other stuff going on that in my first post in a couple weeks you’re stuck with random bits & pieces…
* I had major dental work done last week. This TERRIFIED me. To waylay that I got some GREAT drugs (Hello, Valium…you handsome sonofabitch), had them knock me out…and wore my CUTE new shoes *points to the left* Outside of a couple of bad points (sorry again for yelling at you, dearest husband)…it went smooth. I go in on Wednesday for a crown.
* Hubs & I got to sit in line for 10 minutes at the car wash while an idiot in a stretch SUV limo tried to get his limo through the carwash. Someone that stupid should not be given a license. Seriously. (In case you’re wondering, he did eventually succeed after nearly driving off down into the gully. Makes him no less an idiot)
* The kids also had a dentist appointment. No cavities, just some janked up teeth…thank you genetics for passing on my crazy buck-tooth issues to 2 of my kids.
* In HAPPY news…it looks like I get to see my BFF again in a couple of months. In even happier news…this should occur right around my birthday. This? Gives me giddy giggles…and is sending Archie running over to our neighbor Moe’s…where he’s threatened to sleep the entire time our tiny little house has several more occupants 😀
* I managed to snag the AMAZING defunct HBO series Deadwood on Blu-Ray for less than $100…and we have been re-watching it slowly, savoring each episode. I am deeply ashamed of HBO for many things (see also: True Blood massacring a great book series)…but cancelling this show? Was a STUPID move. Shame on you, HBO…SHAME.
* Thanks to the aforementioned CUTE shoes…I think I may be becoming a tiny bit of a shoe addict. This is not necessarily a good thing…I want to go shopping and find more more more…we have neither the room or money for such an action.
* Ooooh, my time on the wait list is over!! Very soon I’ll be meeting with the artist to design my tattoo. I should also have that by my birthday. It’s my birthday & mother’s day gift all wrapped in one painful, but pretty, bow. In other news – Archie still doesn’t think I can handle the pain. I admit to fear, but I want it…have since I was 18…I just only now figured out what it is I want 😀
* Brandon handled the news of his diagnosis well. He is running track now and it hasn’t altered his life at all. We meet with the pulmonologist next month to get down to the nitty gritty of what he’s going to have to do, and new drugs and assorted stuffs.
* I registered Angel for kindergarten. This has made me very sad. She’s my baby…and she’ll be going to kindergarten in a few months. So not right.
* And on that note – school ends in a month. May 27 we are all done. Not ready for summer!!!
Okay, I’m sure I could go on…but that’s it for now…so many things to do.
by Sarah | Apr 3, 2011 | Photography, Weekly Winners
All taken w/ Canon Rebel XS.
My computer went kapoot & so my blog was neglected, as was my photo editing. So this week I have a little mix of here and there things I did when w/o my computer. Celebrations, storms, and more Cheetahs…
Another Year
* Dad’s bday was a couple weeks ago. My favorite picture of him that day
Support
Storm Front
*I just loved the way the sunlight made the trees white against the dark sky.
Ray of Light
Dressed for Success
Honor Bound
Honored
*National Junior Honor Society. We are all so very proud of him!
Profiled
You look…Yummmmm….
*On this trip to the zoo, the Cheetahs were more active…walking right past the glass where we were watching. This was a fast snap I captured…but I loved the flash of tongue and the focused gaze.
You can find more pictures over at my flickr account.
That’s all for this week. Head on over to Lotus‘ digs to see more!!
Then you come along and say “But she looks just fine to me.” Or “She doesn’t seem autistic.” The newest, “I just can’t believe that HE has CF. I don’t believe it. Are they sure?” And of course the “She/He doesn’t act sick.”
