"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.

Dell

June 5 2011 Dell's confirmation St. Thomas Episcopal Church

When I wishing to be a teenager at 11, Affirmed won the Triple Crown.  I remember watching the races because that's what we did in my family, and I was fascinated by the teenage jockey, Steve Cauthen, who was only 6 years older than I was.  Lately I have often thought of that aptly named thoroughbred.  It feels as if we are on a search for affirmation.

Such a Stuart Smalley moment.
http://www.youtube.com/watch?v=NuGf34F0f5g

Current Minnesota Senator Al Franken kept many folks laughing back when that was his job, on the right and left, because this idea of being affirmed -- validated -- is essential yet almost absurd.

Watching Michael Jordan look himself in the mirror and say, "Because I am good enough," seems comical and ridiculous.

But, it is also true in that nagging you by tapping you on the shoulder way.

In the immortal words of Mick Jagger and Keith Richards, "We all need someone we can lean on."

http://www.youtube.com/watch?v=VdfU4L6SCpo&feature=related

My sweet Dell is looking for that someone to lean on.  Someone to affirm him without mockery but in good-natured ways.  Dell managed to do this despite my never-ending nagging about considering studying and working and trying one's best.  Sometimes my goof-ball of a son does that regardless of my fears -- which are many and voiced frequently.

In the last week and a half,  Dell has gone through Confirmation in the Episcopal church and graduation from middle school at Collegiate.  Both substantial rites of passage stepping closer towards independence.  As his parent, I want to accept the child he is becoming but cannot help myself from insinuating a few (read many) words about how he could maybe get organized and manage his mess. 

Some kids are are easily guided and affirm the parents gifts; other confirm that we are just strapping on the game face every day in an effort to help confirm our parenting.

Dell makes us some kind of 'firmed.  Each day and sometimes every hour, it can be different.

Phil and Dell June 5, 2011 Confirmation

We were surprised he wanted to go through the confirmation process and delighted with his choice of sponsors.  A man as energetic and loving as our child who can guide him in ways that we cannot.  Phil has figured out the art of getting it done on the run, being kind and remembering to pull it together.  Dell wrote Phil a note in which he allowed me to proof read, and he identified these attributes as something they have in common.  It was as sweet as a backhanded compliment from a 14 adolescent male could be and it affirmed my sense that there is hope in Dell's horizon for organization and purpose.

Hopefully in the purposeful declaration of his faith, what he may have really scored is an awesome friend and guide who can affirm in Dell what I somehow cannot.

Peace be with you Phil!

In this crazy mixed up time in which I cannot follow one thought through and can barely manage to plan a day in advance not knowing what will be next, we managed to give Dell a week to be himself -- or as much as I could manage of him.  He had a friends over, he cleaned the pool, he organized his stuff finding an overdue book (from November!).  And, as it happens sometimes, he stood a bit taller.  He grew.  The blazer that fit three weeks ago was too small by Confirmation but fortunately there was a hand-me-down of Houlder's just there waiting for him to fill it up.

Affirming to me that I just need to give the kid some mercy.

Check out this Rolling Stone video from even before I was born:

http://www.youtube.com/watch?v=_V2ESk8ASeM&feature=related

From Jonathan Franzen's "Liking is for Cowards.  Go for what Hurts."  adapted from Commencement speech at Kenyon College 2011

There is no such thing as a person whose real self you like every particle of. This is why a world of liking is ultimately a lie. But there is such a thing as a person whose real self you love every particle of. And this is why love is such an existential threat to the techno-consumerist order: it exposes the lie. 

This is not to say that love is only about fighting. Love is about bottomless empathy, born out of the heart’s revelation that another person is every bit as real as you are. And this is why love, as I understand it, is always specific. Trying to love all of humanity may be a worthy endeavor, but, in a funny way, it keeps the focus on the self, on the self’s own moral or spiritual well-being. Whereas, to love a specific person, and to identify with his or her struggles and joys as if they were your own, you have to surrender some of your self. 

The big risk here, of course, is rejection. We can all handle being disliked now and then, because there’s such an infinitely big pool of potential likers. But to expose your whole self, not just the likable surface, and to have it rejected, can be catastrophically painful. The prospect of pain generally, the pain of loss, of breakup, of death, is what makes it so tempting to avoid love and stay safely in the world of liking. 

For article go to:  http://www.nytimes.com/2011/05/29/opinion/29franzen.html?pagewanted=1&_r=2&ref=opinion

It does boil down to the toothpaste tube.  Can you live with someone who leaves the lid up?  Or drops the laundry next to the basket?  Can you dare to be un-liked and ignored?  My mother said, "If you didn't love your brother, you would be able to ignore him." 

Franzen's article is great.  Technology has become sexy and makes us cool.  We all want to be liked.  We want validation.

Last summer I blogged about trying to teach Dell about the needs and choices humans have according to William Glasser:  http://starchamberexperience.blogspot.com/search?updated-min=2010-01-01T00%3A00%3A00-05%3A00&updated-max=2011-01-01T00%3A00%3A00-05%3A00&max-results=15

Can we ignore the like button on FB?  Can we love someone despite not liking everything they do?  Can we accept that we are not always the most loveable critter out there?  Can we be honest when we say we are ecumenical in our love of all others?  

I believe that we can.  Trite may be tired but it is often true.  Worn out colloquialisms persist despite red notes in the margins of papers because the comfort of the familiar language envelopes our ideas. 

"Through thick and thin."

That defines the Hudgins' family relationship with Collegiate School.  Courtesy of Houlder's illness we have seen this community at its best.  Wednesday during a meeting with the head of the upper school, Houlder had a conversation which essentially reassured him that he will remain a part of the Collegiate until he graduates -- when and how that looks is open.  The courses and plans will unfold as we define Houlder's yet to be diagnosed illness.  But, this new guy on the eve of finishing his freshmen year at Collegiate -- I mean the Upper School Head, not Houlder -- got a key piece of what is essential in an community -- letting the individual know that s/he is a part of them. 

I wanted to cry because there was someone speaking about Houlder's future with anticipation of the good things that will happen.  He was warm.  When he asked Houlder how is was feeling about being sick, Houlder explained that he did not like feeling poorly but that he wasn't worried.  Houlder shared that I was worrying enough that he did not have to.  And this nice newbie laughed and said that is often the case.  Not a condemnation of the me but because that is the way it is.

It has been a thick year -- a year in which Houlder decided he wanted to return to Collegiate after starting at Maggie Walker.  He called the director of admissions and made it happen, and they could not have been more gracious. They dared to give him another try after he turned away for something new.  

That is thick.

But, it has also been a thin year. 

And that it Franzen's point.

As we keep treading down these paths trying to solve this mystery, as I keep trying to decipher lab results and figure out other options, and as I keep reviewing what other copies of mri's I need, and as I keep slugging through phone systems trying to get the medical records -- not the summaries but the actual records -- I am reminded of how much I need the folks who are helping me.  The doctors and nurses and friends who are offering ideas, childcare, friendship, forgiveness, ideas, and concern.  I would enjoy hitting the like button for most of these people.  But others lack of helpfulness or anwers can lead to frustration.  

I want to figure this out!  Really, I want someone else to figure this out!

I am not looking to live Susan Sarandon's role in Lorenzo's Oil.  

I just want to throw on a stopwatch and time some swim meets and enjoy a few glasses of wine with friends around the pool.

That's the thick.  

The thin is trying not to get angry when it is not happening at the pace in which we need and remain optimistic and grateful yet stotic and determined.  Trying to be patient with medical documentation technology that does not seem as advanced as an iphone app.  With medications whose side effects are the same as the symptoms.  It never ceases to be mind-numbing, but this is the rub Franzen mentions.  Do not fear what we don't always know and love.  Dare to experience pain.  

Just because this is hard, should I hide and not try to help Houlder?  

No.  Suffering what is not working seems as much of the equation healing from what does.

Maybe that is what parenting is "bottomless empathy."