First Comes Denial, Then Comes Despair

We thought, or should I say hoped, the storm had passed.  The spasms were gone and Owen would go on and lead a normal, happy life.  We’d look back one day and wonder how we made it through that terrible time.

We thought, or should I say hoped, the medication worked and our little man was spasm free.  Man, that stuff was expensive, but worth every penny because our boy was fine.

We thought, or should I say hoped, we were waking up from the nightmare of the past few months.  Wow, that was the worse dream EVER!  Unfortunately, that was not to be the case.  Little did we know then but the nightmare had only just begun.

In late February 2010 as we began to wean Owen off ACTH, the odd little movements began again.  At first, we thought we were seeing things.  We’d become so paranoid that every little move he made caused us worry.

At first, we didn’t want to acknowledge it.  No, this can’t be happening again.  The medication had worked, right?  The spasms were gone, right?  They had to be gone!

At first, we didn’t want to utter the words out loud.  The spasms had returned.  He had relapsed.  The medication didn’t work.  It’s as if it wouldn’t be true if neither of us spoke of it.  Unfortunately, whether said or left unsaid, the medication had failed to keep Owen’s spasms at bay for the long term.

It’s not like we hadn’t been warned that might happen.  We were told it might not work.  There were no guarantees.  It didn’t work for everyone.  But our minds couldn’t go there.  It was going to work for Owen.  It had to work.  It needed to work.  Failure was not an option!  We simply couldn’t wrap our heads around what would happen if the medication failed.

What we feared had become reality.  There was no denying it any more.  Owen’s spasms came back with a vengeance.  We were heartbroken, devastated, crushed, terrified and down right pissed.  This was all so not fair.  What do we do now?  Was else could be done?

We knew the longer the spasms went on, the bleaker the outlook for Owen.  It’s like every time he had a cluster of spasms, we felt him slip away more and more.  It might sound like I’m being a bit dramatic to draw you all in, but not really.  That’s how it felt at the time.  Every cluster of spasms he had felt like the end of the world.  They had to be stopped!

During this time, we had biweekly appointments with our neurologist.  Her recommendation for the “next step” was an evaluation at the Mayo Clinic.  The Mayo Clinic?  In my mind, the Mayo Clinic was a really big deal.  It was for those people who had mystery illnesses no one else could cure, or those who were willing to try experimental treatments when all else had failed.  I’m sure that’s not really the case, but I had never known anyone who had gone to the Mayo Clinic, hence my perception of it.  We agreed to go there.  The Mayo Clinic should certainly have the answers to make the spasms go away, right?  They had to, because they needed to stop.