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.
by Sarah | Mar 3, 2011 | All About Me, Crap, Cystic Fibrosis, Random, Special Needs, Writing
Dear Mother Nature:
I love you. With all my soul I do.
I beg of you. PLEASE stop with the wet, wet, wet springs (and it’s not even spring yet this year!!). Our poor crawlspace was so happy and dry until you get all deluge rain-storm happy the past few years.
I’ll gladly take more summers like last years incredibly hot one if it means we get a dry(ish) spring.
Thanks much.
XO
Me.
****
Dear Anthem,
You blow.
Denying Cystic Fibrosis meds is NOT COOL.
Eat shit.
Me.
*****
Dear Indiana,
I was so mean to you. I still am sometimes.
It’s not your fault, I suppose. You just happen to house a great deal of redneck twits. Though, per capita, not the greatest percentage of places I’ve lived.
Still, I apologize. You are a saving grace in this insurance Hell. Because of you, our Angel has what regular insurance seems to think she doesn’t need. So thank you and your CSHCS.
I love you a little more every day.
XOXOXOXOXOXOXOXO
Me.
******
Dear Pandora,
I get it. Advertising is important.
That being said, I’m married. Showing me a BIG flash page of singles…not so much.
They weren’t even cute…
Except that bottom one…he’s pretty cute…one little problem…
Oh, Pandora. I KNOW him. He’s married. Cute. But very married. Where did this advertisment come from anyway?
Hugs…but you don’t get kisses,
Me.
****
Dear Top Chef,
LOVE the All Stars season.
Bring it back.
But this time make it fan favorites. And give me Kenny. I loved Kenny and he was gone FAR too fast.
XOXO,
Me.
*****
Dear Angel & Riley,
You two are driving your mama nuts.
Stop beating the living crap out of each other.
XO,
Your very tired mama.
***
Dear Characters,
I love you all.
To my two MC’s:
Keep running me ragged. But please leave room for the new ones. They aren’t as strong willed as you, they are far less developed. But I have to get to know them if I can ever tell their tale.
I promise, if you let me get to know them I’ll give you many long baths together while I’m busy writing the story of the new guys. Not like you need a tub. You’re happy with a crowd nearby…you and the thrill of getting caught.
Behave.
On second thought, don’t…you’re both far more fun misbehaving…
XOXOXOXOXO,
Me.
by Sarah | Feb 23, 2011 | All About Denver, All About Kennedy, Crap, Cystic Fibrosis
Answers.
For once.
A doctor that says…
“I know what it is.”
A doctor that says…
“I know what it’s not.”
No more tests.
No more specialists.
Just once.
For the questions to be done.
For five and a half years it’s been a never ending stream.
Never ending questions.
More specialists than can be counted on two hands.
Tests.
Hurry up – get this test done.
Now wait.
Wait.
Wait.
We have results.
But no answers.
More specialists.
More questions.
Retelling the tales over and again.
Just once.
Just once.
I want an answer.
by Sarah | Feb 2, 2011 | All About Denver, All About Kennedy, Cystic Fibrosis
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).
by Sarah | Jan 12, 2011 | All About Kennedy, Cystic Fibrosis, Hospital
The hospital is only a memory.
The PICC line is gone, only a few scabs and red skin serve to remind us it was there.
A box of leftover saline syringes lingers in the kitchen.
Two more appointments in the coming month loom ahead.
But…
We are in ‘the clear’ as much as we can be.
Angel has resumed her regularly scheduled programming.
With a little bit more joy than before.
A few more crazy antics added to her repertoire.
The songs she makes up, I listen to the words now. She’s smart & clever & playful.
She responds to Dora, Diego, and Team Umizoomi with enthusiasm and joy. She sucks in all knowledge she can like a sponge, seeping off her her sisters growing roster of knowledge.
Her love for her Daddy has expanded and grown since the hospital, with random expressive “I love you’s” popping out so much more often than before. While she still gets mad at him, she snuggles with him more.
The light that has always been our most joyful, smiling baby has grown brighter.
Or maybe we are just taking in that light with greater gratitude than before.
Appreciating and savoring it more deeply.
She is our light.
She always has been.
Nothing can extinguish her.
She’s indomitable.
She’s….our shining Angel.
by Sarah | Dec 31, 2010 | All of Us, Community, Cystic Fibrosis, Hospital
In ll of my years online Archie has been frustrated. He wanted me to get “real” friends. People that I could see face to face, call on the phone (even though I have issues using the phone). That were flesh and blood before me, not who-knows-where across the internet.
Archie hates when I tell this, because he says he does know that the people are “real”…they just aren’t close physically. He knows how deep my friendship with Jess is, after all she’s the first one he called after my surgery, and on other occasions. He would just prefer that my ‘best’ friend live across the street (face it, wouldn’t we all like that).
ANYWAY. I’m getting off track on the point of this post. We were admitted, I tweeted about it and left it at that.
Within an hour, I had a message from the beautiful Emily. It said simply, “What do you need? Tell me what you need and I’ll make it happen.”
I have often talked about the Indianapolis Blogging Community and how wonderful it is. The parties in recent months have enhanced that fact.
But I had no idea what the sense of community in both the bloggers and in my own neighborhood would mean.
Casey came to the hospital loaded down with goodies that Emily had organized. A pillow pet was in there for Angel, as well as snacks from Casey & Emily, and Katy (her delectable goodies are pictured above) and Sarah and MrsBlonde.
So much that Archie and I just stared in awe & wonder at the gifts we’d been given. The support offered. Snacks, full meal dishes that only needed to be popped into the oven, among other things for which we’ll be eternally grateful.
To add to the amazing things these women pulled together for us, I came home to find our driveway cleared of snow thanks to neighbors, a small package in the mail from Michelle (another Indy Blogger), and neighbors that gathered mail and also put together small presents for our little one.
Archie and I have been so touched by the support and caring in our established (and newly established) communities, we are still moved to tears by it. I don’t think we could have made it through these past couple of weeks without these wonderful people that have touched our lives and our hearts.
IT had been many years since I have been established in such wonderful communities.
My heart is full with our blessings, even through the darkness that we’ve been moving through.
****
~Tomorrow comes the post about another lifesaver we had, rather by coincidence. It’s a post I’d been planning on writing with far more humor and tongue in cheek – but now it will be much more.
The seconds tick by.
