"just forget the world'

William and I don't have a "song."  We had a jazz trio at our wedding reception and until about ten years ago our taste in music remained largely divergent.  When we road trip, we often play a name that song and artist game that the kids have adopted.  If there is a bad 70's love song, I know it.  And if there is some heavy metal band from that time, he is on it.  For everything else, we have learned there is an app to id the music (Shazam). 

Music is a huge part of our lives and we are totally untalented except in producing two boys who seem to have the knack for some guitar chords and picking.  Last spring, I was inundated by Snow Patrol's Chasing Cars.  Not quite the ear stifling power ballad of the early 80's but certainly fueled by youthful angst.  The confusion of saying I love you either too recklessly or too sparingly.

http://www.youtube.com/watch?v=GemKqzILV4w

Endlessly, Dell played and played and played that song.  Houlder would join in when pressed.  When I realized that a song I heard on the radio was one and the same, I was tickled.  Intitially.

I heard it again on the way back from Bethesda last Friday night with Houlder.  He was sleeping.  We had spent the day waiting in a doctor's office in hopes of some miracle cure or at least intensive testing and inquiry.  After 2.5 hours of waiting, she had little to offer other than botox to stop the headache and no interest in testing for all the reasons we headed there.

I never thought I would be paying out of pocket for botox for my 16 year on a whim that it might help.

I did.

Of course.

But I was disappointed. 

Really.  Botulism. 

I know what it is really but -- the whole reason I never let Houlder have anything honey in his first year was fear of botulism and here we are injecting medical grade laboratory quality botulism into his head.

Her reasoning was that everything else had been thrown at him and maybe it would work.  When you get to this stage, you just keep trying and hope something sticks.

Really.

We can figure out human DNA sequencing but we just throw meds onto sick kids like checking if the pasta is cooked al dente or not.

As I drove around the beltway after a fun dinner with a long-time friend and her sweet husband and child, my head was reeling.  Skeptical barely describes how I felt.  William was not only wary but shocked at the sticker price.  We paid it; what else did we have?  But, the bile was rising in his throat as he felt jerked into a corner.  We love Houlder.  He means more than that vial of botox.  But, at the same time, the doctor had us wait, never introduced herself, sat at her computer and started asking questions and typing.  When I asked about the PANDAS and the testing -- which we had come for on the off chance that was causing the headaches, -- she dismissed us.  Houlder told me on the way out of the office that he thought she had decided to use the botox before she had even fully interviewed him.  For such a glass half full guy, his perception, perhaps correctly, reeked of cynism.

Driving had me replay the afternoon.  I replayed the last 8 months.  I replayed everything.  I kept looking for that magic answer.  Oprah's aha moment.  Release from the cycle of searching and pleading and hoping. 


When the radio plays this Chasing Cars, I am reminded of how Houlder really struggles to play the guitar anymore.  Brain fog has made coordination trying.  As he slept, I sang the song in my head. Actually taking in the lyrics like I had as a young girl listenign to Z104 on my red 8 track player/radio.  Somehow the words almost had mythical qualities back then.  Driving with a sleeping passenger allowed me to indulge that depraved part of my wistful young soul.

All that I am
All that I ever was
Is here in your perfect eyes, they're all I can see

I don't know where
Confused about how as well
Just know that these things will never change for us at all

If I lay here
If I just lay here
would you lie with me and just forget the world?

Forgetting the world held appeal.  Everything I am, was and had been for the last several months were in Houlder.  As proof, I produced a binder which I carried with a flyer I made promoting Houlder as a potential case.  While believing there had to be answer, fear managed to creep it's forceful voice into my ear.  I struggled trying to find out how I could make a plan to move forward with our other kids.  Would I just forget Houlder and move on?  Would I lay down and quit?  Could I, even for a few days, just forget it all?  All.  The doctors visits, the endless searches, hopes, worries, prayers.  All.

I kept driving.  We came home, he went to bed and did not really get up for several days.  He said that he felt as if his body were fighting a virus and he just had to sleep.  He never got sick(er) but had a miserable week.

He missed even watching the first summer swim meet.

He hurt.

In 24 hours he had 4 cardiac events.  William and I sat on our bed watching him clutch his chest debating where we should take him, who would help him, what happens if the event is over and no one but us sees it, what happens if the event ends and he ends. 

How do we live?

During the third episode which lasted form 5:51am -6:30am, William and I wrestled with the facts.  The day before Porter had asked Houlder if he was going to die during one of the episodes.  "I hope not buddy."

Really. 

We emailed Frazer's cardiologiat at 6:20am.  By 6:45am he had emailed back to come into his office.

He was so lightheaded that the intake nurse would not let him walk, she made him ride int he wheel chair.  He was not happy.  I was relieved to not watch every step for 5 minutes. 

He had an episode in the office.

Don't know what it is, but he is "fine."  His heart is good.

Okay.

Really.

If he lays here, will he be able to get up?

More testing, more upcoming testing.

Strangely, he has seemed a bit better the past two days.  Of course, my barometer maybe that I am not as afraid that he will pass out or collapse like I was on Wednesday or Thursday.

Friday he even got in our home pool for a bit. 

Today, he miraculously managed half a swim practice.  By the time he got home, his tremors and shakiness were intense but he did something.  Kind of like those two hours he went to school in May.  It was something.  He napped.

Who knows what is going on?

He has a well visit Monday --ironic.  But the office kindly called and scheduled my for the doctor's lunch hour.
 
To date the botox has had no positive effect but I am strangely singing this love song in my head.  At times is hopeless -- but occasionally I feel as if there may be a light.