by Sarah | May 21, 2011 | All About Kennedy, All About Molly, Crap, Special Needs
We have no lingering baby toys.
They broke them all.
Toddler toys?
The same.
Toys that were mine as a child, passed on to Brandon, and then the girls…
Now in the local landfill…destroyed in little pieces.
Close playtime and giggling.
Always dissolving into tears and screaming.
Hand made curtains, lovingly sewn and hung.
Ripped off the wall, the rod broken.
The girls have always been more destructive.
Their room is a barren waste-land of decorating because they can’t be trusted w/ a dresser, much less finer details like lamps, pictures, or even hangers.
They are five and six now.
And as they sit here in extended time out for their latest run of torture, mayhem and destruction. We are left wondering.
When it is time to say “Enough is Enough”?
Is it sensory issues? Is it rotten kids? Bad parenting?
Did we go wrong somewhere?
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?
We have no lingering baby toys.
