In HER Time…
We chopped her hair off.
She had us worried.
Terrified.
She wasn’t eating.
Her hair was so thin. She was getting weaker.
We chopped her hair off.
Now…
She’s eating like a champ. (Almost) Everything we put in front of her.
Figures.
My Other Worlds
I’m a lot of things every day.
A wife.
A mother.
A sister. A daughter.
Housekeeper. Doctor. Therapist. Advocate. Chef. Chauffeur.
But at night. The house gets quiet.
I turn on my music.
I open my word processor.
New worlds. New people. Mayhem. Romance.
It’s where I lose myself.
Where I vent frustration.
Where I find part of my bliss.
I’m a writer.
Weekly Winners – #icepocalypse Edition
All taken w/ Canon Rebel XTi.
This week Indiana suffered through the Icepocalypse. Not much chance to get out and do anything – but I did get a few decent pictures.
Clustered
Flower Popsicles
Cold Grill
Caged
Green Long Gone
Hope Dashed
*Love the juxtaposition of the fresh grown buds completely frozen over.
Frozen
*This is our street. Not a lake. Our street.
See more of my favorite photos over at my flickr account.
That’s all for this week. Head on over to Lotus‘ digs to see more!!
Who is that? Oh…it’s me!!
Today.
Today I’m feeling a crackle of fire.
The spark started a couple weeks ago.
I was setting a daily schedule (that went by the wayside during the storm – restarting on Monday). Despite my inherent hatred of mornings – I was getting used to the 6AM pattern. Waking up, making breakfast & lunch for Archie and Riley. Sending them both off, doing a little of my personal morning routine. Sending off Brandon to school. Finishing my morning and getting started on my day with Angel. Getting chores actually completed.
This week has been off due to the inches of ice (we estimate there is 3 inches on the top of our truck).
But today there is a definite flaring of the fire that’s been smoldering. This isn’t forced. This is real. I’ve been writing (a LOT), I got good news on my manuscript, I’m getting my hair cut and colored tomorrow, and I have a few other things to look forward to in the near future.
It feels good to be in a good place again.
I’m not out of the woods, but the sun is shining through the trees. That is definitely good.
****
P.S. I signed up for NaBloPoMo again in February. They have a theme “character”, but I probably won’t follow it too close. I am severely disappointed in the lack of posts (period, not to mention their quality) in December and January and wanted to challenge myself right back into the game. Wish me luck 😀
Yup. I was a dork.
Circa (guessing here) 1983?? At our cottage in Canada.
Teeny bikini and all. It wasn’t all cuteness like this:
Circa (another guess) 1980? (81?).
Yeah, this one is less dorky. (and looks AMAZINGLY like my Angel)
OF course, than there’s this one…where my brother gets to be the dork.
Yeah, that’s better. Bro sticking out his tongue.
I’m thinking this one is 81-82ish too.
(Many thanks to my long lost Beach-pal that found me on facebook and scanned in these memories [1st & 3rd pic are from her].)
Yup. She’s a Mutant…or maybe just a Weirdo…
For weeks the countdown to the next CF clinic appointment has been on. Angel and Brandon both had their blood drawn for the full genome sweep to determine their CF standing.
While yes, I’ve been in a panic about Brandon’s…
I’ve also been secretly worried about Angel’s. Despite everything, I wondered if it would actually come back positive.
Don’t get me wrong. I know everything we’ve been through. I remember the past three years clearly.
It’s because of that that I’ve been worried.
In case you don’t remember, our Journey to CF (Part 1, Part 2, Part 3) was not a clear, direct path. In fact, it wasn’t until May of 2010 and 1 positive test result that our highly experienced and dedicated, CF specialty, Pulmonary doctor said without a trace of doubt that this was CF.
So, in the back of my mind lingered that bit of doubt. Wondering, worrying what the test would show.
Tomorrow was supposed to be the day.
The city is covered in ice and the appointment has been CANCELED.
When I got the call I asked for the nurse to call me back. “Brandon is freaking out” was my excuse – but in truth, so am I.
They had to run Angel’s test first so they knew what to look for in Brandon’s. So….her results are in – his are NOT (oy).
In short, Angel has CF.
In length, the two defects that create her CF are VERY RARE. She’s a mutant of a gene mutation. She’s…unique. (we always knew that).
We don’t know the full extent of what this means for her. Or if it means anything at all beyond her having it.
We have to meet with the doctor for that.
So we’re back in a holding pattern. Our next scheduled appointment is the 23rd.
We’ll be looking for and hoping for answers for Brandon before then. The CF nurse is keeping an eye out for us. If I don’t hear anything by Wednesday of next week, they haven’t got them in. I’ll call again the following week to see. If they still don’t have anything, the next week will be our appt.
So…all we know now is that our little Angel is a weirdo. Unfortunately, this isn’t really news. (But it is a relief to have genetic confirmation that her strain is unusual, and we haven’t struggled to reach an answer that was false).