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Showing posts from June, 2014

The Fine Line

I am reminded again this week, that we walk a very fine line.  Maybe several fine lines to be more accurate. To be honest, I am done with fine lines.  I feel drunk and overhung on the past month; both emotionally and physically and nothing looks straight to me anymore and putting one foot in front of the other isn't as easy as it was a few months ago.

There has been so much in the news this past year about children being taken from their parents because the parents have been accused of causing medical harm to their children, even accused of making up symptoms and diseases.  I am not a judge and jury but I have had a hard time comprehending how that could happen and as I read their stories, I believe that the parents were doing the very best they could.  They were advocating for those children and sadly, fell into a system being choked out by egos and inflated positions of perceived power!

This week, I have been startled at our own little confrontations with doctors and can see ho…

Not in the plan

We have had some interesting developments in the past 24 hours.

Earlier in the week, Shelbie noticed some petechiae on her arm.  They come and go in very small amounts but for the most part, we chalk it up to vasculitis, leaky capillaries blah, blah, blah.

Saturday, she was covered in petechiae and purpura.  We tried not to get alarmed but as they just kept coming and coming, I decided I better take her in today.

Right after church, I picked her up and we headed for a CBC.  The doctor found lots in her mouth!  Petechiae in the mouth is never a good thing.   Well, to my surprise, her platelet count was 125.  Not as horrible as the symptoms look.  The alarming thing is that just three weeks ago, she was well into the upper 170,000.

We aren't exactly sure what this means but my gut tells me that ITP is back.  I am pretty sure we will continue to see dropping platelets.  When she finished chemotherapy 4 years ago,  she was in the upper 200,000 and stayed there for about three years…

Burning up the day

I swear, it feels like months since we got the new diagnosis.  It's been barely three weeks!  I couldn't stand the thought of dragging around the day for one more second.

So, what's a tired girl to do?

Skip out on work...Call in sick...The dog ate my homework...Not doing this...

Yep, that's what we did.  I had a great appointment this morning actually, with a really cool client who has become a friend.  I enjoyed being crafty with her as we put together an awesome canopy of tulle for her beautiful daughter. We have many things in common and there is no doubt, our paths crossed for a good reason.  It felt so good to be away from a desk, a computer and cleaning supplies and do something halfway creative.

When I got home, I sat in the cool basement where the kids were and said, "Let's get out of here!"  I feel like we have an oxygen shortage around here.  I had to answer a couple of emails, finish a drawing but two hours later, we headed out to the Hot Spri…


It's been awhile since I stopped by's been a while since I wrote anything, anywhere!

 I remember doing this in 2007 when Shelbie started her 9 months of chemotherapy; I retreated to my own little world.  That entire year went un-mentioned on the blog or any journal I own.  It sucked the life out of me.  Now I regret that I didn't write about that year.  It would have ended with us surviving one of the scariest years of my life.

I'm sure this year will be much the same, we will survive.  That's what we do. Survive.  Like a wave of trouble, we are swallowed up but it doesn't take long to surface again, we bob to the top, gasp for oxygen, sputter out the bitter, salty taste, straighten our shoulders, check to make sure we can touch the bottom and swim on.

Honestly, I've been hesitant to write because my feelings are still so mixed up and they swing like a pendulum from being completely numb to totally overwhelmed.  My post following the last one, I w…

This week

This hard.

This week, I feel like my hollow body is filled with concrete

I feel like I have all of a sudden developed a raging case of Attention Deficit

I can't figure out what to do and when to do it.

When I do have something to do, I feel like I am swimming in pea soup.

People talk to me and I can hear them and see them moving their mouth but I am brain dead.

I feel dead.

My senses are all on high alert.  On Tuesday, we had to drive into the city for a Dr. appointment and I was driving behind a Semi truck when his back tire blew out!  It was the biggest bang I have ever heard!  I slammed on the brakes and ducked!  Thankfully, there was no one too close behind me.  There was rubber peeling off that tire and flying through the air.  Even though I had created quite a bit of space between me and him, we were still getting pelted with flying debris.  He just kept on driving and smoke was pouring out from his axle.

After the doctors appointment, we went through the Wendy&#…

Perfect timing for a perfect plan

There is so much to process.  It's not just about a new disease.  It's about the old disease, where we've been and where we are going.  I am still overwhelmed.  Totally overwhelmed which isn't a bad thing but it sure isn't very fun and not a good thing either.

I have tried to remain focused on what is right with life right now, instead of what is wrong and what the next year holds for us, the next 5 years...the next 10.

Some of the astonishing feelings comes straight from Heaven.  I have spent a great deal of time just pondering the past few days, like the past few 16,425 days.  I was born into a stressful situation.  I was born with a condition called congenital hips which caused my legs to be backwards.  At the same time, shortly after my birth, my mom was diagnosed with Non-Hodgkins Lymphoma.  I was born into trials and that has set the tone for my life...a blessing maybe.

I have never really known anything but trials.  As a teenager, I was the loner, the gee…

Before You Forget

(This is a letter I wrote to myself in the early morning hours of Friday, May 30th.  The day we received our new diagnosis of Dyskeratosis Congentia- After this post, you will find a lengthy explanation of what Dyskeratosis Congentia is)

Dear Kath,

 Do you remember some 17 years ago, sitting in the CF clinic, in the GI department at Primary Children's? The sweat tests had been done, intestinal biopsies done, tubes and tubes and more tubes of blood had been drawn.  Specialists had been seen and now, it all boiled down to one single, flimsy, white sheet of copy paper.  Your trembling fingers grasped the edges of that paper as you tried to read the words of a fatal fate that seemed to slip off the page with each shake.  You were brave.  Tears never leaked from your eyes.  They tumbled back down into your heart, leaking through the cracks and crevices already forming.

"Your children have pancreatic insufficiency and neutropenia.  There are only two diseases that cause pancreatic …

Dyskeratosis Congenita- Part 1

I hate these words.  I hate that I even know how to say these words.  I hate that I know how to spell them like a spelling bee champ!  I hate that I know what it means...

Most of all, I hate that those two words have now defined all the problems my boys have ever faced!  I really liked it when we didn't know...I thought I did anyways. Why have I spent the last 22 years fighting for this day to happen?

HOPE.  I guess when I think about it, it was hope.

I HOPED we really weren't dealing with Shwachman Diamond Syndrome, though it was a good fit for all the symptoms we had.

I HOPED that the doctors had just made a mistake, it was really just a random bone marrow issue without lasting consequence.

The door was left open for HOPE.

Friday, I knew the diagnosis that we would be given.  I should have been prepared, better prepared mentally.  The truth is, the past nine weeks, I hardly turned the pages of the internet to read all about it.  I had HOPED that maybe the clinical testin…