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 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.
by Sarah | May 26, 2011 | All About Denver, All About Kennedy, Cystic Fibrosis, Special Needs
When a pulmonologist with over 20 years of experience declares your family’s case is “Weird”…you know you’ve got issues.
Yesterday Angel had her (4th) CF birthday visit. Brandon had his first CF visit ever.
There was the standard blood work, sputum cultures and x-rays done and then after lunch we got to meet with our pulmonologist. During the entire day the oddness of our family’s case was expounded upon.
* Both have defects on the CFTR gene. They both have slightly different defects. Angel’s leans more in the ‘standard’ CF direction…Brandon’s does not.
* The defect for both kids is one that has not been seen before.
* It is generally thought that their case of CF is “mild” as per the standard.
* Both of them had positive sweats, but in a low-positive area.
* In the strangest note of the day the pulm said that you could lay Angel’s x-ray on top of Brandon’s and the affected area in both of them would match up perfectly. They have almost identical lung damage in the almost exact same place.
We are moving forward with them. Their treatment plans are set. Brandon will have another test (a new CF diagnostic test).
We will meet with the genetic counselor still – the appointment is a month out. It was suggested that because of the oddness of our case we may all end up having our genetic tests run.
Until then we continue on. As we have been.
One foot in front of the other. One day at a time.
by Sarah | May 22, 2011 | All About Denver, All About Kennedy, Cystic Fibrosis, Photography, Weekly Winners
All taken w/ Canon Rebel XS.
Today we walked in the Great Strides walk to raise money for the Cystic Fibrosis Foundation…All of my pictures today are from and in honor of the walk. We’re still accepting donations, so if you have even a spare dollar to help us find a cure, click my button over there. Even though CFF is getting closer to a cure every year, even today we had a moment of silence in honor of a 17 year old that had lost her battle with the disease just last week.
Purple for the Cure
Ready to Walk
Dropped
Twisting to Throw
Bracelets of Hope
Blow it Away
Walking for a Cure
Sunglasses Please
Sprinting Ahead
In my small little team, the two that were my CF babies decided to race on ahead of the rest of us…and literally ran right out of sight.
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 | May 21, 2011 | All About Kennedy, All About Molly, Crap, Special Needs
We have no lingering baby toys.
They broke them all.
Toddler toys?
The same.
Toys that were mine as a child, passed on to Brandon, and then the girls…
Now in the local landfill…destroyed in little pieces.
Close playtime and giggling.
Always dissolving into tears and screaming.
Hand made curtains, lovingly sewn and hung.
Ripped off the wall, the rod broken.
The girls have always been more destructive.
Their room is a barren waste-land of decorating because they can’t be trusted w/ a dresser, much less finer details like lamps, pictures, or even hangers.
They are five and six now.
And as they sit here in extended time out for their latest run of torture, mayhem and destruction. We are left wondering.
When it is time to say “Enough is Enough”?
Is it sensory issues? Is it rotten kids? Bad parenting?
Did we go wrong somewhere?
Five years of toeing the edge has changed me.
