by Sarah | May 10, 2016 | All About Molly, All of Us, Autism, Connective Tissue Disorder, Redefining Perfect, Special Needs
I should have known better.
My first mistake was getting “comfortable”.
As comfortable as anyone can when you have three special needs kids.
Everyone was doing well, no major incidents for two years (*knocks on wood*). I was well-adjusted to our current status, our version of normal. Our version of perfect.
Were there hiccups? Well, sure. We have two girls on the verge of tween-dom and all the drama that comes with. Drama we’d been through with the now-teen.
But overall, we were good. We had things handled. IEPs in place, regularly scheduled doctors visits…in fact, we’d gone down in occurrences of those (from quarterly to every third, or half a year).
During our month of hell, part of the trauma was dealing with issues with Kennedy and Denver and their new doctor’s ways that we didn’t like and his poor poor choices. Situations we are still coping with, but wish so much up in the air, we are in a holding pattern (I hate holding patterns).
Then there is Molly.
Several months ago we were hanging around the house. I had my hands on Molly’s shoulders, and she moved. Immediately I noticed something odd. A very pronounced clicking when she moved her shoulder. I asked her if it hurt, it didn’t. I knew it wasn’t right, but with the chaos of all the crazy around this house it got pushed to the background.
Then today we had her regularly scheduled autism checkup with her geneticist/neurodevelopmental doc. We love this man (if not the hospital he’s affiliated with), and he’s been great with Molly from the start.
So I said, “I know this isn’t your area, but could you check out this weird thing?”
He checked her shoulder, had me do the same to look for a specific issue, then had her lie down and rotated it, checking everything. As she sat up, she decided to show him how she can bend her fingers in hyper-flexible ways. “Isn’t that cool?”
And so, the doctor explained to me that Molly has no connective tissue in her right shoulder. When it’s rotated, it becomes dislocated and pops back in. It is bone on bone.
Add in the hyper-flexibility in her joints…and he thinks we’re looking at a connective tissue disorder–one that we aren’t specifically testing for yet.
First step–we must go to an orthopedic doctor for her shoulder and determine the best course of action. She’s to stop goofing around with it (she finds it a neat trick), and take it easy on it, even though it doesn’t hurt.
As for the connective tissue disorder (he did not specify which as of yet)…it’s a wait and see. Deal with her shoulder first, watch for other symptoms (migraines, heart palpitations).
We are once again in the “hurry up and wait” world.
I hate being here.
With a white hot passion.
I was definitely stupid to get comfortable.
I know better.
by Sarah | Apr 7, 2016 | All About Denver, All About Family, All About Kennedy, All About Me, All of Us, Disney, Make-A-Wish, Redefining Perfect
This year when we went to Universal we found this guy.
He was super friendly and even nuzzled Kennedy a bit…and didn’t try to eat her head…
Much.
Honestly, it took some convincing to get the kids to go see the raptor, and I was more excited than they were to go see it (and Molly flat-out refused).
It was one of the coolest moments we shared outside of Hogwarts, though.
The raptor was impressive, and the calls it made were perfection.
I was so geeked out, I could hardly think, but it was still so awesome. I can’t wait to go see him again.
5.5 years until 2021!
Not that I’m counting, or anything…
by Sarah | Apr 5, 2016 | All About Denver, All About Erik, All About Family, All About Home, All About Kennedy, All About Me, All About Molly, All of Us, Redefining Perfect
March was a sucktastic month, I’ve made no secret of that.
But it’s over now.
With some carnage around us, we are gathering the pieces together, and re-evaluating some things.
The teen is graduating soon and moving on to bigger and better (and warmer) things. He’s pulling up stakes and moving down south to pursue a dream.
Whether it’s me turning 40, hubby turning almost-50, the teen leaving home, or just the hell of a month we went through – we are starting to look at where we are ourselves vs. where we want to be.
We’ve begun to dream big.
Bigger than we’ve allowed ourselves to dream in a while.
Right now it’s all pipe dreams and wishes,
but as Walt Disney said – “All our dreams can come true if we have the courage to pursue them.”
Now all we have to do is muster some courage and pursue them all.
We needed a spark of hope, and we’ve given it to ourselves.
It’s kind of terrifying, and so very exciting.
I’d gotten in a rut, and sort of beat down.
It feels really good to dream again.
by Sarah | Mar 28, 2016 | Crap, Random, Redefining Perfect, WTF?
I don’t care if I’m a few days early.
I don’t care if it isn’t technically correct.
I’m calling it anyway.
March is DEAD. It can die now. It’s April -4 so far as I’m concerned.
HI APRIL!! You’re a beautiful month. I know you’ll be a fair sight better than that bitch, March.
After all, the only thing she gave me was broken drain pipes, cash flowing out way faster than it was coming in, heartache, and stress levels so high I couldn’t sleep.
April, I welcome your soothing rains, your signs of spring, you warming temps. I also welcome the arrival of April 20th when I can see and hug my bestie and my second mom again. Hell, when I can hug all those crazy, insane ICDC people again.
So hello, April -4th. Glad to see you. You’re a beautiful thing, you are.
by Sarah | Mar 22, 2016 | All About Me, All of Us, Crap, Random, Redefining Perfect
I have about 5 posts sitting as drafts in my wordpress from the past two weeks. They are reflections on the depression I’ve been in. The despair I’ve felt as crap-storm after crap-storm hit us from all directions.
Leaking drains.
Lying doctors.
Stupid cars.
The brutality of the flu.
One thing after another.
After another.
After another.
Much of my facebook feed has been filled with the same.
I do not often fall into the pit of depression, but I sure did this time.
It’s been tough, and painful, and I am still not all the way out of it.
And I know it is nowhere near what others go through every single day of their lives (those like my husband), but that makes it no less valid.
However, little changes are happening, and big changes, too.
In the depths of this all I went out without knowing where I was going.
A little voice in the back of my mind was telling me to hop a plane anywhere.
Another little voice pointed out a less expensive option, and the tattoo parlor in my path. And thus, I got my feather. A symbol of a lot – of freedom, strength, dreams of flying away, and perhaps even a nod to my upcoming book series.
A couple of days later I got a surprise package in the mail filled with my favorite candies from Canada (thank goodness my childhood friend found me on facebook a few years back. 🙂 ).
There are still struggles abounding. Still construction that needs to be done.
But I am trying to claw my way back out.
I cleave to the moments of good.
The tokens of happy.
I’m trying to find the upside of down.
*Random Note – after I wrote down the title of this post it hit me…I once did a musical by that name. In musical I think. Can’t find any evidence of it on google…but damn, isn’t weird how those things hit you at weird times!
My first mistake was getting “comfortable”.
Then today we had her regularly scheduled autism checkup with her geneticist/neurodevelopmental doc. We love this man (if not the hospital he’s affiliated with), and he’s been great with Molly from the start.
