The great disconnect...

Yesterday, we had our appointment at the Oncologist's to begin the genetic testing for our new disease.  There is no easy way to write that, that really makes sense...

Our new disease... Sounds like it's something I'm bragging about, we have a new disease and you don't! Or, that it is something we are so proud and excited about; something we chose, a realized dream...Our new disease...with a loving sigh tagged on the end!

It was clearly a strange morning!  In my mind, it felt like something so big!  So big, that the world should have stopped living, just for a moment, but it didn't seem to care.  In my mind, there should have been a moment of silence when everything just stood still.  I just wanted everything still and quiet...I wanted time to stop!  I wanted all of this to stop.  Even my own kids didn't recognize my anxiety as we drove up to the Oncology office.  They were out of the car and up the steps before I even had my seat belt off!

"What's the rush you guys?!  Wait, just slow down."  They didn't understand how those words tangled with the unspoken truth, still to be found.  Panic was set to fire, a 21 gun salute rang through my head.

For them, it's different and I couldn't figure that out; one of the few times, I couldn't leave my own shoes to walk in their's, for just a moment.  I was stuck in my own head and it felt horrible but I didn't want to be in their's either.  There was such a disconnect.  I kept wondering where my little army of support was...why was I doing this alone?  Again?  Sometimes, there is power in a witness.  I can't really explain that but there just is.  There was no one to take note of this moment.

Sam and Shelbie bickered and annoyed themselves with each other's breathing as we sat and waited by ourselves for awhile before other patients with their pale face and loose fitting wigs, began to drag in for more chemo cocktails. That sentence sounds mean, but I felt nothing for them and that's just not my usual self.  Another disconnect.  I was cold and empty and honestly, I might have been jealous.  They had something that everyone understood.  Cancer.  Everyone knows Cancer.  Everyone rallies around Cancer, shows up.  Cancer is normal.  Cancer is in all the textbooks.  Cancer can eventually be fixed, if you are one of the lucky ones.

We don't have cancer.  At least not yet, I'm sure it's around the next corner.  We have something that nobody understands. Something that hasn't even been written about; we have to write history and I can think of more comfortable places I'd rather be.  We have something that drags on and on.  There is no end in sight; actually, I'm glad there is no end in sight, I just wish the quality of our time was better.

 I let the kids carry on, like kids.  Like little, helpless, tired kids.  Confused and angry.

Now we wait...and wait, like we are playing a very long game of hide and seek except I feel like the rules for this game keep changing and that is frustrating and I'm standing in their faces, waving my hands and jumping up and down and screaming for their attention, but they don't see me, still. "Remember us...we are waiting to hear our fate?"

 It makes me want to utter the four words I try to stay clear of, LIFE IS NOT FAIR  and bone marrow failure sucks.  It just does.

Last night, I found myself horribly homesick for Spencer.   This morning, after a good long bout of anger and frustration and words I shared with a doctor that I should have kept to myself, I suggested to the kids we just blow off our responsibilities for the weekend and drive to Colorado just to catch a glimpse of Spence. What I wouldn't give to throw my arms around him!  I couldn't even get past the word 'Colorado' and we were all standing in the kitchen, chocolate donuts in hand, crying!

It has been 3 months since our doctor in Seattle called with the news of the new mutation.  We have at least two more to go until the clinical testing is complete, then another bit of time until all the specialists are in place in Seattle...and then we will sit down and finally... told what the new disease is.  If you ask me, science needs to figure out a different method of doing this and communication needs to improve.  As soon as I can solve world peace, I will work on this little problem.  To make a family wait almost 6 months with life changing news like this is not cool and only makes us feel even more displaced and lonely in this big ol' world.

Well...this has been quite the whiny rant.  Part of me wants to go back and edit the content with a happy, sparkly coating of sugar and hope and peace and happiness and all things la-di-da, but I think I will leave it.

Things just got real...

 I have already gone through the diagnosis process and taking in the news of Shwachman's.  Not many people have to go through that agonizing process twice but here we are.  Today, may not be my finest moment but tomorrow is another day and I'm sure I will shake off the worry and find my peace again.  That's life.