by Sarah | Jun 11, 2011 | All About Denver, Cystic Fibrosis
Five years of toeing the edge has changed me.
Of looking into that abyss, only to be yanked back..and then shoved right to the brink again has worn down my soul.
You know it’s bad when you look a doctor dead in the eye and say:
“I’m going to have a nervous breakdown…”
And then you DO.
For four years we rode the see saw of “Is it CF? Is it not?” with Angel.
Then came the hospital stay. The genetic test.
All answers pointed to yes.
Then along comes Brandon. All answers leaned in the general direction of no, but then bounced right into the yes area with 2 ‘final’ tests.
The yo-yo was killing us. After four years of ‘kinda’ with Angel we were sure that Brandon would provide us with the clear cut answers.
We were wrong.
Six more months of a yo yo and then…
Diagnosis.
Confirmed CF.
But.
Oh, the but’s.
But.
“But we can pull the diagnosis as diagnostic tools for CF develop.”
But.
“But there’s one more test.”
But.
I’m tired of tests.
Of questions.
But.
“It’s the new ‘gold standard’ test.”
But.
“It’s in testing stages.”
He should do it.
So he did.
Against my judgment.
And the yo-yo springs up again.
The test was negative for CF.
“But it’s just a small piece of the puzzle.”
They say.
“But his diagnosis may remain.”
They say.
“But this test. It shows him normal.”
And I break down.
I am tired.
The string of the yo-yo has broken.
I see the depths of another depressed funk right at the edge of my vision.
All I’ve ever wanted was answers.
One.
Clear cut.
No more questions.
One.
Without a ‘but’.
One.
Without more tests.
One.
Without answers how can we accept our truths?
Without answers how can we adjust?
How can we Redefine Perfect?
I feel like I’m falling off the edge into that abyss.
I don’t like it.
Part of me wants to never ever see another doctor.
Run another test.
I want solid ground.
So that I can find my footing.
Move on and live for a change.
I don’t handle questions well.
Answers are how I survive.
Give me answers.
Solid ground.
by Sarah | Jun 9, 2011 | Crap, Cystic Fibrosis, Random
We have a busy day today, and the lazy days of summer that have finally arrived have my brain saying “Uh….huh?” instead of coming up with deep blog posts. So those combined factors give me a blog post of random bullet points…
* So You Think You Can Dance has started! While my husband cringes and cowers, I drink up every minute of this show…LOVE summer when it comes around!!
* Within two weeks time we went from insanely & unseasonably cold/rainy days to insanely HOT killer heat waves. To the point of not being able to go outside some days. What ever happened to spring?
* Today Brandon has some weird test for CF that apparently has become the new “Gold standard” test for the disease and could yet again change his diagnosis. Can I say that that alone has me thinking I don’t want it done…I can’t tolerate any more flip flop on this…if they change his diagnosis AGAIN after all of this I’m just going to break down and cry.
* In exactly 5 weeks I will be having the best birthday ever. My best bud, Jess, will be coming into town with her boys. They’ll be staying for about 5 days right around my birthday. I’ll be going to get my tattoo (YAY)…and it will just be an amazingly fun weekend 😀
* I’ve been cleaning. Randomly. Thoroughly. It’s strange. I hate to jinx it. It makes my husband very happy.
* In 10 weeks my kids will ALL be in school. Angel will only be in school for a couple of hours a day…but…my kids will ALL be in school. There is something not right about that thought.
* On a related note – the third/final trimester sort of sucked for both of my school kids this year. Grades dropped, behavior dropped. Not sure what happened there but leaves me feeling BLEH.
* I don’t know if you somehow missed the hullabaloo over the Circle of Moms Top 25 Faith Blogs that was turned into a spiritual warfare (including death threats to one of the nominated blog owners) – but I’m proud and pleased to say that a Pagan blog has won…and one of my favorite Pagan bloggers at that. Congrats, Mrs B!! You behaved admirably and held your head high through the chaos and ugliness thrown around.
And that’s it for today. I need to get back to my day…lots to do before we have to leave for the hospital for the newest test.
by Sarah | Jun 7, 2011 | All About Kennedy, All About Molly
The first time I read them I was four years old.
I stole them out of my brothers room and kept them tight.
That original box set still sits on my dresser.
Dog eared.
Worn.
Missing covers.
Now the girls are reading.
Everything they can get their hands on.
Now I pass these stories onto them.
We read together, they try to read alone.
One day I hope their copies are as worn and well loved as mine.
As well as every other book they touch.
The love of reading runs rampant in Archie & I.
I think they’ve caught the bug.
No better addiction to pass on.
by Sarah | Jun 5, 2011 | Photography, Weekly Winners
All taken w/ Canon Rebel XS.
One week after my complaints about rain and cold, we got summertime. We played outside, drank kool-aid, and got dirty. Welcome to summertime!
And of course was my sons high honor of a batallion coin.
Jump Rope?
Roses
My Riley – ANTM cycle 22 will be hers.
My Angel – ANTM won’t be calling w/ her on-camera antics
KOOL-AID
Homemade Lemonade
Honorable
*Given to Brandon by a Scout Leader (also an army Colonel).
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 | Jun 2, 2011 | All About Denver
This came in today’s mail.
A note for Brandon.
From a Scout Leader.
A Colonel.
So honored.
Touched.
For his recent challenges.
For his bravery in these challenges.
So very honored.
And proud of our boy.
by Sarah | Jun 1, 2011 | All About Molly, Autism
The school year is over.
The book bags hung up.
The pencils returned to their cases.
The boredom sets in.
The insanely hot weather.
The year of struggling for what was right.
IEPs and diagnoses and social anxieties.
In the midst of the struggles, wings emerged from a cocoon.
Some social advances were made – not many, but a few.
But there were wings…
Words on a page brought her in. Drew her with their magnetism. Something to love with words and stories.
Intelligence was her spotlight. Math and reading brought her joy. Her grades excelled in those areas.
In the end there were gains. I’ve made peace with her being in school, though I still worry every day.
So I focus on the gains.
I watch her read, and teach her sister to read with joy.
To have her love what her Daddy and I both love so much.
In the end, we had some wonderful gains.
Five years of toeing the edge has changed me.
