by Sarah | Nov 10, 2010 | All About Kennedy, Crap, Cystic Fibrosis
Lost. Shivering. Hazy moon is doing me no good.
My baby is sick.
And I didn’t even know it.
Today was Angel’s regular CF clinic appointment. Outside of our visit last month for a cough that proved to be nothing much, she’s had no symptoms. Her appetite has been great, no lethargy, no tiring easy.
I was expecting nothing.
Until we stepped into the room for her functions, and mother’s intuition kicked in again. From her first breath into the machine I knew. There was a problem. Her breath wasn’t spiking up as high as it usually did. Breath after breath was low. I got worried.
The Fellow came in and examined her and didn’t seem concerned outside of her very low functions. Then she went to get the big guns, the pulmonologist. First word out of the main doc’s mouth was x-rays.
What it came down to is once again we are on the edge. The precipice of what could happen. Our Angel has taken us to this precipice many times over the past year. We’ve been ‘threatened’ with hospital time if she doesn’t bring up functions, or one thing or another.
Every time she succeeds in beating the challenge.
Every time I spend a month worried that she won’t.
This time it’s one month again. Her functions must improve by December 15th or we may be seeing her first visit to the hospital at Christmas time.
For 3 years I’ve been sitting on the edge. Waiting for the first big illness. It hasn’t happened yet. I’m not wishing it on her, I’m not wishing it on us. I’m just tired of wondering when that shoe is going to drop. Figuring out how we will handle it. Worrying that we won’t manage.
I hate living like this.
I hate this illness.
I hate worrying that every little cold will be the big one.
I hate that my baby can be so sick and I didn’t even realize it.
I hate that her atypical form gave us three years of hope before dashing it with the help of Pseudomonas.
I hate having to force aside the fear and worry just to live each day with a bit of normalcy.
I hate the month to month.
I hate that for a few moments each day my absolute love for my baby is eclipsed by fear, worry and pain.
by Sarah | Nov 9, 2010 | All About Me
Just one this week…so that’s my theme 😉
Feeling Good
* Was feeling pretty this night. That’s pretty rare, so I snapped one.
**** Head on over to check out who else is flipping out:
by Sarah | Nov 8, 2010 | All About Me
Day 12 – Something you never get compliments on
My nice perky bewbs? Yeah. I’ve had 3 kids, breast fed 2 of them. Short of surgery that’s not gonna happen and I’m not worried about it.
No. I can answer this easily and honestly.
My organization and mad cleaning skillz. I’ve never ever been a neatnik. I’m so bad I’ve turned poor Archie from Anal retentive to living with constant clutter.
I would defend myself and say that we have 1100 square feet (that’s even a little high) for 5 people. But to be completely honest I have NEVER been good at cleaning or organizing.
Once in a while I go on binges. I clean, I organize and everything is lovely. Then life and old habits resurface and it’s back to clutter central.
I live a cluttered life. I never get compliments on how clean and well organized I am. Ever.
*And I’m hearing a huge “Ain’t that the truth” from the next room about now.
**Like my blurry web cam picture? Took that a while ago…just got around to using it 😉
by Sarah | Nov 6, 2010 | All About Denver
Straight A’s.
Six classes. All A’s.
101% in Pre-Algebra.
Interested in photography.
Finished Cross Country, possibly looking toward Track.
In Boy Scouts.
Almost 13.
He’s growing up.
Far too fast.
Far too far.
by Sarah | Nov 4, 2010 | All About Me
Day 11 – Something people seem to compliment you the most on.
Okay, this was initially tough because I don’t hear compliments often (whether it’s by habit or design is a different post). I sat there thinking “What in heck am I ever complimented on?” Besides my husband’s compliments I was drawing a blank.
Then it hit. I remembered what I always seem to hear…often.
“You’re so creative.”
There are definitely worst things to be. I like being able to make clothes, knit items, make jewelry. Whatever my creative bent is intent on learning. Which is often a lot. Which is often the downfall of my creative bent. Being creative costs money *lol*
In all seriousness…it’s what I get complimented on a lot. People point out things I’ve made, or am capable of.
It started when I was young, watching my mom always sewing. She used to make us matching outfits for Christmas every year. Then I watched her doing cross-stitch and picked it up myself. I found it to be almost soothing, monotonous. I wanted to be like Mom.
Of course, she did the costume adjustments for my dance studio, and then was the costume designer for my brother’s high school and its musicals. Eventually a few years ago she got into quilting.
I branched out beyond what she did. In fact, at first I wasn’t very good at sewing. I wasn’t good at patience when it came time to cut out a pattern and sew the pieces together neatly. Truth be told I still struggle with this a little. But now I draft my own patterns, so I’m more willing to take my time. I also went a little further than my mom. I learned to crochet. I tried to learn to knit in high school without much success…now you will frequently catch me with knitting needles in my hands.
Then I’ve done a few things to decorate our home and now I have my photography.
I like being creative. A good thing to be complimented on, I think.
by Sarah | Nov 3, 2010 | All About Denver, Crap
For 12 years he survived. All bones intact.
The worst he’d done was cracked his head open once or twice – not one stitch, not one drop of glue, had ever held his flesh together.
Then back in the spring he became a comedic sight. One finger broken on his left hand, two fingers sprained on his right. He couldn’t use either hand, doing schoolwork was a challenge. All of that because his buddy cracked him in the hands with a golf club (on accident). Still, that was minor. The ‘break’ in his finger was in the growth plate. It healed in short order.
This time he isn’t quite so fortunate – although still relatively lucky.
He went on his first serious Boy Scouts camping trip. They hiked for several hours (his pack was 22 pounds), and then would make camp for the night. He went with our neighbor Moe*, who is also one of the troop leaders.
That morning I had a bout of mothers’ intuition. For some reason the thought hit me probably 10 in the morning and my brain screamed at me, “Brandon is going to get hurt today.” I didn’t fully listen, brushed it aside and went about our business…but even Archie says I was “off” all day. It was a ‘sweats’ day all day…I was just ‘eh’.
Then at 9:30PM Archie’s phone rang. My heart stopped, and the second I hear Moe’s voice I was on my feet, rushing to get dressed. I knew something had happened. I didn’t know what or how or why, or even how I’d get where they were, but I was going.
I was talked down from my insanity and eventually (two hours later) Brandon was home. Since he was exhausted and the scouts had come “prepared” (it’s more than just a saying), he crashed and we went to the ER in the morning. A couple hours later we were home with a new brace and sling – because for some reason ER’s no longer cast fractures (even compound ones – luckily Brandon’s was not compound).
A “buckle” fracture of the radius and ulna, a little more severe on the radius (which explains why he can more his fingers better than his thumb). It should heal in about 6 weeks and his cast will come off in five.
But to me it’s a badge of honor for him. He’s always been a tentative boy, careful…and not a ‘man’s man’ type of boy. In the past year he’s started to grow and change and bit by bit he’s becoming more of a man. Cross Country, Scouts, are both steps toward becoming a man instead of the curly-haired boy I remember so well. This cast is a symbol of that change, of him stepping into a world of strength. His handling of the pain has been so much more than it ever has been in the past. He’s growing up. Now he’s got a physical reminder of his steps away from me.
Lost. Shivering. Hazy moon is doing me no good.
