by Sarah | Mar 31, 2011 | All About Denver, All About Kennedy, Cystic Fibrosis
The stopwatch was never ending.
Just a few weeks ago I lamented the never ending ticking of time.
Over four years of non-answers for two children, going on months for the latest.
I just wanted answers. One answer.
Today the stopwatch started beeping, signalling time up.
It sounded strangely like a ringing phone.
**
Yesterday we took Brandon for his “repeat sweat” test. It was to rule out error in the initial (low) abnormal score. Accounting for the test having an error and his numbers actually being in the normal range.
It was a formality.
Except, it stopped being a formality when the doctor’s office called us to give the results…instead of waiting for our call.
This time the numbers were different – but they were in the positive range.
Add in the ugly appearance of his lungs on the x-ray for December.
And the appearance of staph on his sputum culture.
And the odd result of his genetic test.
They’re calling it.
Brandon…
He has Cystic Fibrosis.
Which gives Angel’s odd course to diagnosis even more credence.
I asked for answers.
Now we have to figure out how to give answers to my 13 year old son.
Angel is growing up with it from the age of 1…to her it will be ‘normal’.
Brandon is a fully functioning, exceptionally brilliant young man…with a bad case of the worries.
His life today will not change…he’ll have more meds, and will get a chest compression vest/machine of his own.
But getting him to understand that.
To understand its not a death sentence.
That his life will be full…and probably very long.
Somehow we’ll make him understand.
Once we get our heads around it.
by Sarah | Mar 22, 2011 | All About Me, Crap, Writing
Feel no pain, but my life ain’t easy,
I know I’m my best friend.
~”Escape” by Metallica
I’ve never understood it.
Why I am like I am.
I know my parents didn’t understand, but they tried.
I remember visits to the psychologist at UB-Amherst.
I remember the embarrassment I felt about those visits.
I remember keeping my truth hidden.
The truth I feel inside.
It was blamed on teenage depression (though no meds were used – not that I’d have taken them). A reaction to the teasing and bullying I was subjected to.
It was an acceptable explanation. Reasonable. Everything made perfect sense to them.
It didn’t make sense to me. I’d felt it so long before the teasing started. The disconnect. The sense of being…different.
While I would play with the other kids, race around outside, laugh, swim in the lake, in pools, dance in a group or solo, lived life like any normal child…
I felt like an outsider. Looking in on these events.
There was only two places I felt complete.
The first was on the stage. Expressing myself in dance and movement. I knew there was an audience, but I couldn’t see them. It was me and the energy on that stage, wrapped in lights and confidence I felt nowhere else.
The other…oh, the other was such a cause for turmoil.
It was in my head.
In my room, buried in books. Buried in worlds that weren’t here. Weren’t pressing on me. Weren’t all around. They were safe, in my head. Oh, there were dangers, adventures, worlds unlike any other…but there I was in control. There I wasn’t the odd duck in a sea of normal people.
It wasn’t until high school that I truly found the release of creating my own escape instead of reading the escapes created by others.
When I am in these other worlds, creating them, reading about them, my brain stills.
In every day life the pressures, the chaos, the thoughts in my head swirl and turn until there is no escape. The smile I wear is genuine, I’m not completely lost to the chaos. When I am in life I am happy.
I can’t call it depression because that isn’t what I feel – it’s just a never ending chaos. It always has been. For as far back as I can remember it seemed as if my mind never stopped. When others could sit quiet and relaxed, my brain was still turning over possibilities of life, problems needing answered, questions needing asked. There is no true being still for me. My mind is not happy with ‘still’.
There are times when we are all sitting as a family, but my head is millions of miles away. I get called on it by my husband. Wondering where I am because I am not “here”. It can go on for days sometimes I get so lost. So far gone.
It frustrates my husband. Even when he knows I always “come back”.
I feel so bad for that.
That when I am here…writing…reading…focused and intent…I am lost.
Lost to him.
Lost to my kids.
Lost to this real world that is so chaotic.
Because here is where it is still.
The thoughts stop.
I am in control. Focused on making the lives created under my fingers into something worthwhile. Fleshing them into real people I could never be. Worlds I could never live in. Adventures I would never see otherwise. The chaos there is planned, expected, created by me.
Some days it is hard to pull away from the peace.
And that is wrong.
Real life should be more appealing.
But my ‘daydream’ moments pull far too often.
I’ve never been able to stop it – just ask my parents. I was often chastised for escaping to my room and my books. My Dad feared that it would lead me to a life of addiction like he lived through.
And it has.
Addiction to writing. To the internet.
To the “other”.
I’ve never understood why I am so different. Why it seems like the way my thoughts function is so different from everyone else. Why my social anxieties seem so extreme. Why they only go away at the theater (I’m the life of the party at auditions) or online. Why I turn into a blazing ass trying to be nice and “fit in” with the cool kids when I meet others in person.
I don’t know how to change it. To live in the real world. To form “real” friends that I communicate with face to face instead of keyboard to keyboard.
Effort has been made.
But it’s painful. Frightening. Anxiety inducing. Being face to face.
I don’t know how to find an acceptable balance.
But I know that I need to.
by Sarah | Mar 21, 2011 | All About Family
We fought like cats and dogs.
He loved sports.
I loved dance.
There was no middle ground.
I was a tomboy, but I would wear a dress every day if you let me.
I didn’t understand him.
He got frustrated with me.
Mom said we fought because we were so alike. I thought she might be a little bit crazy. Dad and I were nothing alike. In my mind he didn’t support my dancing, he thought it was frivolous…not like sports. He got angry at me for getting straight A’s & B’s – while my brother barely brought home C’s. For some reason it was never good enough…it was always, “Well, this 95 is good, but why wasn’t it 100??”
It took way too many years.
A happenstance turn of events that left it so that it was just us.
Me & my Dad.
For 2 months while Mom tried to sell our house in Buffalo I lived here alone with my Dad. Went to school. Made dinner. We watched TV, made s’mores in the microwave.
Talked.
There was a shift during that two months. My older brother wasn’t around (it was his senior year, he finished it in Buffalo & then stayed there). My Mom, usually the mediator, wasn’t there.
We got close.
From that point on the fighting lessened. It didn’t disappear…I mean, Dad and I are both hot-heads. Blow ups are bound to happen…but things eased up. He took me to the theater. He was great around my friends – even taking us camping on several occasions.
He’s my Dad.
Now he’s turning 62.
In the past few years he’s been battling illness, and fighting to get time with his family. For his grandkids to see their Papa as the strong, smart and stubborn man that my brother and I knew growing up. I know that some days are harder than others.
I don’t think I’ve told him enough how much I admire him for all he did RIGHT when we were growing up. Or thanked him for trying to push me to work harder (just because it didn’t work doesn’t mean I don’t appreciate the effort).
Happy Birthday to my Dad.
The impossible, stubborn, bull-headed, strong, smart, hard-working, hunting, playful, supportive Dad that both frustrated me and held me up in an esteem I didn’t realize soon enough.
I love you Dad.
by Sarah | Mar 20, 2011 | Photography, Weekly Winners
All taken w/ Canon Rebel XS.
The return of warm weather has given me more opportunity for pictures. Not constant, but a few good days. Angel & I got out of the house a few times this week. One of them was a long awaited trip to the zoo. I bought us a year pass a couple weeks ago and have waited for a great chance to go. So this week has many of those, and a few others that I managed to grab during the week.
Swinging
Huddle
Leap
Nice Rack
Pride
Mirrored Loungers
Wrinkled Cankles
Spike
Basking
It was also the first day of the orchid show at the Gardens attached to our zoo. I snagged a few photos on a very quick run through it during the short time we had left. I plan on returning in another week or so w/ the kids during spring break. Brandon wants to practice playing with my old camera by getting some pictures there!
Unique
Cascade of White
Tripurple
Gorgeous
I stumbled upon this at my local Half Price Books. It is special for many reasons to me…namely the condition it’s in (further explained by the next picture which shows how old it is), and the fact that the book seems like it is custom made for the main character in my novels, who would have been alive to purchase it brand new.
First Edition
Look at how gorgeous & white the paper still is. And yes, that does say 1883. I may have found a new addiction…old, gorgeous, first editions…*le sigh*.
This week I definitely have to send you to see more zoo pictures over at my flickr account. I had SUCH a hard time picking pictures this week, there are tons more over there!!
That’s all for this week. Head on over to Lotus‘ digs to see more!!
by Sarah | Mar 19, 2011 | All of Us, Random
Every day the weather is getting warmer.
We’re seeing the sun start to shine.
Warmth, happiness and hope are replacing dark, cold depression.
And every day I’m adding something else to the calendar.
Out of nowhere our calendar has appointments and events. Overflowing. Notes for next month, fully occupied days this month.
Life is springing up out of the ground.
It’s overwhelming.
It’s exhilarating.
Welcome, Spring.
by Sarah | Mar 17, 2011 | All About Denver, All About Kennedy, Cystic Fibrosis
The seconds tick by.
Second by second.
Into minute by minute.
Into hour by hour.
Into days.
Into years.
4 years ago we were in the midst of a struggle for a diagnosis. The years of questions evolving from one stubborn cough. Four months later it came down to an unsure “most likely is” but “might not be” diagnosis of Cystic Fibrosis. (read the full story in parts: 1, 2, 3)
Last year in May we got the words from the pulmonologist that made Angel’s diagnosis “Absolute“. Because unless you have Cystic Fibrosis…you don’t get psuedomonas.
Then I got the brilliant idea to have Brandon tested. This spiraled into genetic testing for both Angel and Brandon.
The test results are in.
And still we have no answers.
They both have a defect on the CF gene.
Angel’s is more ‘severe’ than Brandon’s.
In either case the defect found is not a KNOWN strain of CF. It’s not a known defect…it’s on the gene…but it’s never been seen before.
The official word of the pulmonologist…the one we have trusted for 4 years…the words she’s calling it…the words she’s using…I want to have faith in them.
She says that how she reads it is this:
1. Angel has Cystic Fibrosis. As we have said for 4 years. The defect on her gene is not a recognized defect…but it is CF. It’s quite possible that this unusual defect will mean her CF will continue to be a milder version, we just don’t know.
2. Brandon has asthma. While he has a defect on the CF gene, also unrecognized, it seems more like he’s a carrier than an actual CF patient. He is to continue to see the pulm for asthma every six months and that is how we will continue.
3. Both of them need to go to a genetic counselor for a more in-depth appraisal of the results. So we can learn more about what it means for Brandon’s future & having children…so we can look more into the oddity of Angel’s defect.
I want to have faith in these words.
I want to have faith in the pulmonologist that has been with us on this whole confusing journey. That is the top in her field. That has guided us this far with an unwavering conviction in everything she says and does.
My faith is shaken.
Once again I find myself floundering in the unknown.
On a journey that I thought was decided. The path clear. The stopwatch clicked off.
Someone restarted that stopwatch.
The time is ticking away again.
The uncertainty dragging each second out until it feels like a day.
My faith in the doctors faltering.
My faith in the tests fading away.
Back into the murky waters of unsurity.
Is it CF? Or isn’t it?
All I have ever wanted for my children is answers.
One thing I have never received…
Is one 100% without a doubt pure, positive answer.
Not for Riley (we still don’t have a 100% on her, just a ‘likely’). Not for Angel (we thought we had it, but it was ripped away). Not for Brandon (not when he was little & not now).
Why is that so much to ask?
One answer.
I’ve lost faith that I will ever get that.
Just one answer.
Just one.
The stopwatch was never ending.
