Angel goes in for her checkup after her rounds of antibiotics. It’s time to pay the piper. There are three possible scenarios after today.
1. Her lung functions have not gone up – hospital admittance, do not pass go, do not collect $200.
2. Her lung functions are up – go home. Get a call in a week that her sputum culture results are bad and we need to check into the hospital.
3. Her lung functions are up – go home. No further issues.
Now, obviously I want #3 to happen. I want her lung functions up and I don’t want a call in a week ordering us back in. I want her to be clear.
I fear the worst.
Stress for Archie and I is high today.
So I turn to a show I never watch, to find a pair of beautiful young women to inspire me and give me hope. Two sisters, Ali and Christina, both with CF (in a family of 4 children, all of whom have CF) – SINGING on America’s Got Talent. They give me joy, they give me hope, and they put me in tears every time.
*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.
Gimme head with hair
Long beautiful hair
Shining, gleaming,
Streaming, flaxen, waxen
[nggallery id=5]
The time has come, the girls are at the age for “pretty hair”! The whole reason I wanted girls…to be able to do their hair and play with it and style it.
This used to be my escape. My me time was being on the computer so much that I wore down the keys.
I’m a homebody.
A computer/internet addict.
I’m well aware of my problem, and even though the first step to recovery may be admitting you have a problem…it didn’t help me.
Once everyone is in bed, this is still my escape. I come here every night in the quiet of my house. I write into the wee hours of the morning. Not blog posts, obviously since I’ve been so lax around here. I write stories. Dream of publication. All while ignoring my blog. I’ve sort of tied my avoidance of posting into the appearance of my parents on facebook, and everyone and my brother knowing my blog exists. A very public form of stage fright, if you will. I’m trying to get over it. I miss my blog. I hope to be back here more often. That’s why I prettied the place up (loving my new layout 😀 ).
My husband doesn’t like my computer, or my internet. For many years it’s been the cause of issues. Because my BFF is online. Because I spend so many hours on it. Because I don’t make my escape to the ‘real world’. The relationships I formed with other bloggers or non-bloggers online did not count as socialization. He doesn’t get the camaraderie. He might not ever understand. But that’s another post entirely.
In an effort to get along better with my husband (and rest my eyes and carpal-tunnel’d wrists), and to ‘get a life’ – whatever that means, I have started to venture out of the house.
I’d joined a playgroup when the girls were young – but always balked at taking out two young’uns together w/ diaper bags and such…it was always SUCH a hassle. Well, guess what. They are now 95% potty trained – diaper bags are no more! (We only wear diapers at night) So I don’t go to every playdate, but we get out.
I’ve been stepping away from the computer to hang out with the neighbors. My neighborhood is one I’ve raved about before here, on FB and twitter. It’s great for the kids, and it’s great for adults. I’ve made good friends with my neighbor across the way, and that works for me. Sometimes I spend the whole night away from the computer just chatting with the neighbors.
But I’ve also started to have ME time. Not w/ the kids, not w/ Archie. Just me.
I’ve reconnected with an old friend from high school and once a month we get together to eat, drink, and be drinky…er, merry. It’s been great to find out that even after losing touch a few years ago we still get along good and can talk for hours. One of these months I’ll be abandoning my family for a whole night to stay at her place.
My neighbor that I connected with and I started going to Zumba together (and are now talking about going to a wine tasting together – much yummier than Zumba). It about killed me, but it was fun. It was a six week session and I vowed to not re-sign up for it again. I had a few issues with it (false advertising for one)…and it just wasn’t my favorite. So now, I no longer go to class with her because she signed up for boot camp and I said “Um…NO.” I picked two classes…sooo…
First is Yoga.
I’ve been wanting to take a yoga class for a while. I’ve done a little in my house when we had FitTV, but I’ve wanted to do a full class session.
So on Tuesdays, for an hour and a half I’m in my Yoga class. I had my first session on Tuesday and loved it.
My body is sore, but it was great. The four week session is far too short, and I’m already planning on signing up for the next session once it’s posted.
Then I signed up for Body Sculpt.
I haven’t had my first class yet, and I’m a little scared. They’re calling for 5lb weights, which I have but never used.
I’m looking forward to it. Getting back in shape is something I’ve wanted to do. I’ve bought DVD’s like crazy – but making myself do them doens’t work. With these classes, I pay for them, I’m far more likely to do them.
So for me, I’m still using my computer – but I’m trying to not be so dependent/addicted – but I’m also trying to step out. To get away and back into real life. My girls are older, it’s getting easier – it’s getting harder.
I’m taking time for me. Time away from the stresses of family. Time away from the stress of being attached to the computer. My blogging has suffered, my writing has slowed…but I think in the end it’s better for me. My blogging and writing will improve because of it. Being a shut in doesn’t give you much fodder, after all. Life experience does that 🙂
(I make this post as I plan to sit in front of the computer and pre-write nearly 5 blog posts.)
