Resolution. Intention. Aspiration.

Flee from the concept or embrace it?

 

In looking ahead, how can we escape looking behind?

How can I adequately review our year?  

It feels dishonest to spin everything glossy and sunny to remember a rosy view for what was a begrudgingly difficult year.  It feels either Sylvia Pathian to play my misery is greater than yours or Pollyanna-ish to delight in all we've met.

We lived.  We ate heartily.  We laughed.  We cried.  We trolled the internet.  We drove.  We read.  We sat.  We waited.  We grumbled.  We visited doctors.  We danced.  We stayed at hospitals.  We went to Ocracoke.  We swam.  We cheered.  We yelled.  We raked.  We laundered.  We baked. We played soccer.  We played little league. We survived.

Stunningly, we were held by friends -- new ones and life-long.  

If you ask Porter, he will tell you two things:  1) "I don't want to eat anyone else's food," and 2) "My cats."

If you ask Houlder, he will say: 1) "I can drive for you," and 2) "POTS."

If you ask Frazer, he will be silent or offer to lego/bey blade with you.

If you ask Dell, he will think.  And, maybe he can tell you after you ask him 3-4 more times.  

If you ask Will, he will shake his head and grimace and say 1) "Can it suck anymore?" and 2) "Will our kids ever do anything to help?"

My memories vary: the strength we found in each other, the exhaustion of it all, the kindness of friends, the path of our lives determined by our health, the tender time we need to give each other, the kindness Collegiate has shared, the intensely amazing community of Southampton, the tolerance of St. Thomas for atheist acolytes and unwavering  offerings of prayers, the tolerance and patience needed to raise four boys, the generosity of homeschooling buddies always willing to let Frazer tag along, the willingness of my dad and Will's parents to help, the unexpected gift of Kenyon K80ans, the cuteness of kittens, the delight of believing in Santa and the tooth fairy, the sunsets and cocktails at Ocracoke, the willingness of neighbors to drive my kids to and from school, the support of friends, and the fortitude of my husband.

Our resolution is simple:  keep on.  Our intention is wellness.   Our aspiration is home improvement.

It has been rewarding to have an place to process our lives and an honor to have been read. 

In honor of my grandmother

       Born into the Jazz Age, my grandmother Helen Gerber Bloom embraced many opportunities previously not encouraged for young women.  Born on Valentine's Day, she later lost her brother on her birthday and chose to celebrate on a different day.  It was a selfless act that embodies much of who she was.

       Graduating from Pembroke/Brown with one of the first degrees in Occupational Therapy, she began her life as a career woman.  Meeting Mort and marrying him was a change in many ways.  Their honeymoon on an ocean liner to Havana was punctuated by an event that many of her generation remember the way my peers remember the Space Challenger blowing up:  the bombing of Pearl Harbor.  After the captain had received word of the tragedy, the ocean liner went black and sailed to Cuba in the dark.  Grandma recalled the palpable fear passengers and crew felt about the possibility of another attack in the Atlantic.  There is a beautiful glamorous black and white photo of Helen and Mort in Havana on their honeymoon, but their life together began in shadow of World War II.

       My grandmother raised two bright capable children. Despite her early beginnings to be a modern, independent woman, she spent the majority of her life supporting Mort and caring for her children.  Helen worked hard to provide, care and love each child.  Amazingly she remained independent and vibrant through her bridge, avid reading and friendships she made in both New Jersey and Florida. 

       Helen never worried about what she did not have but if what she had would be enough.  She was careful, thrifty and willing to go without.  She enjoyed nice things but found joy in even small things.

       She always encouraged my education and my curiosity.  She was one of the few who thought teaching was a natural fit.  

      I remember her holding her first great grandchild, Houlder, in 1995.  She had such a smile.  It was a treat for everyone to know her life provided for that moment.  In 2000, I flew down with three boys four years old and under, and she took us around to the safari and the parks.  She enjoyed them and shared many stories of what it was like for her as a mother.  The best part was that she offered no advice on how I should be doing it, but only kind words about how I was doing it.  She was such a positive person.

       Helen was a worrier-optimist as only a Jewish grandmother could be.  With concern and a sincere frustration that my grandfather's loss of vision prevented him from reading, my grandmother only expressed how hard this was on Mort.  While I felt it might have been harder on her to keep him entertained, she did not complain.  She stressed his discomfort; her compassion was a lesson.

       In 2008, we drove down in March and spent some time with Grandma.  She had been a widow a relatively short time and was more introspective than in the past.  She managed pleasantly and without complaint the challenges and troubles of her circulatory issues.  She focused on staying active with her bridge while acknowledging that few of her early friends were around anymore.  Her mind was sharp as ever.  Our conversations would lead her to sending me articles later relating to our discussions. 

       Loving until the end, she sent me an article recently about Houlder's chronic health issues.  As difficult as managing her own mobility had become, she never once complained to me and continued to express understanding and concern for someone else.

       In the end, her life may be most memorable for her willingness to put others first and never gripe about her own discomfort.  She did not want those of us who survive her to linger through the slowness passing can be and surrendered to the process, once alone, to pass onto whatever is next without being a burden to others.  Without complaint.  Strong.  Independent.  Selfless.  Helen Gerber Bloom, my grandmother.

The Cave

 When I first started writing about the journey with Houlder, I felt like we were managing each moment.  Our lives had shifted and changed substantially without us understanding; we functioned by putting out fires and wearing the face of normal.

The greatest gift Vanderbilt gave us was July.  Once we knew we were going, we stopped searching and looking for answers and doctors.  It was SRA full time.  We had decided that we could not change or fix and handle anything, and our boys -- especially the other three -- needed normal.  They needed practice and schedule and friends and the joys that only that little old place offers.  It may be wrong to attribute so much joy to one place, but it works for us. 

In my last blog a month ago, Houlder was readying for his final swim.  It was an evening with exciting races, friends and pleasant weather.  Houlder swam his heart.  He began struggling after the first touch and he had 75 more yards to go.  He raced friends who swam magnificently.  After the second touch, I cheered like a fool to distract myself from jumping in to pull him out.  He told me later that when he came into the final turn, he wanted to get out but he could hear so many people cheering him on.  He told me, "It gave me the strength to keep swimming."  I could see his body struggle and shake.  My tears were quietly unstoppable.  He touched the wall; people cheered.  Will and his coach Mike went to him as he did not look like he could make it out. 

William going to him is significant.  He is never spooked.  When Frazer was born amid emergency and needing assistance, he never blinked.  When Dell had a scare with a health issue, he was steady.  He just never worried.  He waits and assesses.  Will attending was tender and frightening.  It took over 30 minutes for Houlder to stop having tremors and shaking.

But the amazing thing about him is that he appreciated how people encouraged him.  

He slept for almost two weeks following this swim.

He managed mite movie with Porter and pasta night but had to skip the jello wrestling and pep rally.

He slept through champs.

I did not know if he would make it to banquet. At our house, SRA champs week is like Christmas week.  Full of so much joy and delight and fun.  It is amazing to me the inter-generational conversations and fun.  The banquet is like Christmas morning opening the presents.  It is not the trophies but the senior speeches which this year were astounding in their frank expression of how SRA is a part of them and will always be a safe place and fun place and special place no matter where people move or how life can be tricky.  It is also the dancing and celebrating with everyone afterwards.  The electric sly, the conga lines with young and old and the sense that this is the final evening of our collective soul for the season. 

Saturday he met with a coach and a dad and helped with the slide show.  He took a nap.  He felt like he could go.  He clapped when his brothers and friends got their trophies.  He asked if he would even get the trophy.  I said, "Sure.  I paid the registration.  You're golden."

Then, this amazing little recreation association which dedicates itself to providing old fashioned family fun -- like going to camp with your kids -- reached across the illness and the longing and spoke about Houlder.   His coaches recognized him for offering Dedication, Devotion and Determination in a special 3D award in honor of a family who loved Southampton so much that after they moved to NoVA, they continued to travel to Richmond to swim for SRA in the summers for many years. 

When Mike began introducing the award, that was the moment William broke.  People applauded and stood.  Houlder was surprised.  I could think of others who could have received it because at SRA there are many who qualify.  But it was sweet.  Dell turned to Houlder and was uncharacteristically kind, and Houlder was shockingly willing to hear it (they are still siblings less than two apart and bickering is a way of life).  We held joy.

The banqueting continued with dancing, cheering, running and talking. 

Little did the throngs know that their moms had held two secret meetings to share a little something with them.


http://www.youtube.com/watch?v=zrQ37X3s24M&feature=feedf

We moms --  40-50 of us -- average age of old enough, had some jello courage and danced with our kids and friends and laughed and "had a good night." 

The next day was like that post-Christmas blues.  We just were.

I spent the next week trying to plan for Frazer's year of homeschooling and asking Houlder every few hours, "What do you think about school?   How do you feel?"  I guess that I hoped that the answer might change.

Surf and sand and good friends carried us through last week in Ocracoke. 

High school life begins tomorrow for Dell as he tries out for soccer by training the next two weeks.

We had hoped to find full answers to Houlder's health by summer's end and have him return to school.  We had hoped that we would have sloughed through come to the other side healed reviving the standard chaos. 

In lieu of that, we had July.

We are still holding hope's hand.

We don't know what the best thing is for Houlder.  He cannot handle a half day.  We wonder if he could manage one class.

We wonder if we should find a lyme disease expert.  We wonder if we should go to the doctor in California.  We wonder if we have found the answer.

This experience has been heady.  For all the sadness and frustration and anger, there has been more joy.

Not many moms get to spend so much time with their teenager.  Here is a song form a group Will shared with Houlder who in turned shared with me.  "I will hold on hope."


http://www.youtube.com/watch?v=3KkUeRPjc-Y

Mumford and Sons

Vanderbilt

Nashville.  Who knew? 

The four day trip there and back was informative, fun, and somewhat overwhelming.

Vanderbilt is beautiful!  We visited both the Adult Heart and Vascular side as well as the Children's hospital.  By far the most organized place we have been and friendly.  We truly got a sense that patients were why careproviders were there which was nice after ten hours in the car.  We also did some sightseeing and saw Nashville's full scale replica of the Parthenon complete with Athena so huge that Houlder and Will looked like minny mites standing next to her. 

http://www.nashville.gov/parthenon/

We also went to the Frist Center and saw a thorough and amazing Andy Warhol exhibit.  No matter what folks think of him, just seeing Keith Richards in a photo from his late teens or early 20's before the ravages of his rock-n-roll life was worth the entire exhibit.  I never would have thought Richards was such a sweet baby faced kid.

http://www.fristcenter.org/site/default.aspx

On Tuesday Houlder went to the adult side and had autonomic function testing. 


http://www.mc.vanderbilt.edu/root/vumc.php?site=adc

On Wednesday we met the pediatric autonomic doctor.  He was caring and smart. 

Unfortunately, despite a bizallion phone calls and emails and physical requests, all Houlder's paperwork was not there.  We had every test result up to about a week before we went minus tilt table.  I had been unable to get those local results the day of the test or even order them a day later.  I had Vanderbilt request them as well which we also signed off on.  It should not take an act of God.

So, his diagnosis is relatively certain but waiting for more results.  We also learned that at Vandy, they screen some of tests to rule out adrenal tumors differently than they do here.  The doctor still needs to find out if one quality was tested.  According to him, without it, the tumor cannot be ruled out.  The tumor is non-cancerous and could be removed.  It is rare but right now we are not dealing with the average bear.

I am trying to follow up on the test results and what not.  But, summer makes some things tougher than they should be.

We are still waiting for some blood work Vanderbilt did, but it looks like Houlder has something called POTs.  Doctor there is calling it orthostatic intolerance while waiting for blood work and tilt results.  Doctor said that everything in file pointed to POTs.  In true form, Houlder's test results flip flopped while there.  At home, his heart rate has been an issue but not blood pressure.  There, blood pressure was issue.  Frankly, it does not matter in that treatment is same and expected healing time is the same.

This site explains autonomic dysfunction well:

http://www.dinet.org/index.htm

Houlder is not getting enough blood circulating in his brain.  When he stands, the blood goes to his feet and not enough to his brain.  It most likely has been going on since last fall when he started having some troubles concentrating, but we ignored them.  In fact many symptoms may have been there but he just kept functioning.  The headache in January was severe enough that it captured him.  While he has been released from the constant grip of the headache, too much up and down motion and activity give him one fairly quickly.

Fortunately there are medicines to try to treat this.  He has been on one for a bit now.  It may be what helped reduce headache issue. 

Unfortunately, the doctor felt that it will be at least 6 months to a year before we notice improvement and will likely take 3-4 years for him to improve enough to return to his life.  Pretty much encompasses high school.

The upside is that he will return to to himself. 

The thing that we have spent the last several days trying to get our brain around is what it will look like. 

Another Collegiate family has had to deal with this for over 5 years.  They met Houlder and I for lunch on Friday.  The mom said that she told folks that it was like having the worst hang over of your life, every day --  all day long.  Doesn't sound too groovy!

In a day he may have one good hour but often times not.  He is himself -- constantly trying.  He has temporary memory issues and concentration issues.  School is looking less possible.  A sweet friend came over the other day to try to teach Houlder some trig; it was a bit of a struggle.  Poor friend had to keep repeating the problem over and over.  Yesterday when Houlder went and saw Harry Potter with a friend, during the movie the friend had to wake him up.  He gets tired and just conks out.

While we were gone, three families who took our other children had to endure a swim meet with a lightening delay keeping them up until 1am.  Folks took photos and texted them to us as we headed to Nashville.  Our friends have been great.  Sara took care of the kids once they returned home Tuesday evening.  Porter does not remember all the hours Sara took care of him because he was so little.  He was a bit of handful asking me on the phone who was this woman who kept putting him in time out.  The perfect young woman, dude. 

For now, we need to meet with Collegiate and determine what -- if anything -- Houlder can do this fall.  We hope to take it one semester at a time.  We cannot fathom another way.  If there were, we would be trying it.  I know lots of parents out there who go to school a second time through their kids, but I am not smart enough to do Houlder's math!  He will be taking the road less taken but hopefully not for 3-4 years.  We are praying for a return to normal sooner than later.

Tonight is the final swim meet of the summer season.  Houlder will get to swim his beloved breast stroke.  He has not practiced, because it wipes him out.  He cannot dive off the block -- afraid of him passing out.  But, it will be great; being in the water even briefly brings him joy.  The opposing team's head coach is one of Collegiate's swim coaches.  He is letting Houlder start in the water.  The kindness of others still amazes me, and it is what we are trying to focus on.  It is Frazer's final meet of the season.  He has done shockingly well.  Still no Phelps in the pool, but it is nothing short of unbelievable compared to last year.  He has even managed some place ribbons which is feat he has not before due to the limited nature of novice male swimmers in the upper ages.  Dell has had a great season and hopes to hit a triple tonight.  It is a long shot but one he would love to see happen.  And sassy P-Bear is the first 6 year old mite in our family to qualify for champs.  The kid whizzes through the lane cracking us up the entire time.  He is not a baby anymore.  But, at SRA there are lots of kids qualifying for champs.  Porter just gets a Q after his name and the glory of knowing he did that and no one -- not even the uber god-like big brother did that. 
 
With school activities starting in four weeks, we will embrace what is left of summer.  Leave the doctors alone for now and enjoy some of that old SRA magic.

Tennesse Bound Despite Abated Headache

Dell

In a nut shell, nothing has followed script.

On June 10th, Houlder received botox to stop the headache.  Yes, paid cold hard cash to a neurologist in Bethesda for that gem of a treatment option. 

He came home and felt worse than he had felt -- ever.

Slept almost non-stop for 48 hours. 

Had four cardiac incidents in 12 hours, headed to cardiologist and wore a holter monitor to take 24 hour worth of ekg readings.

8 days later with a still intense headache, he could not help himself and swam a partial practice with SRA.

10 days after Botox, Houlder still had headache but decided to swim back stroke at the meet.  He had not been in pool except for this partial practice.

I am glad to say that he lived. 

And at this meet, William spoke to one of our neighbors who also teaches at Collegiate.  William mentioned how we had been looking to get to Vanderbilt.  Well, her brother-in-law is a caridologist at Vanderbilt.  Vanderbilt which has one of the best and most comprehensive autnomic diagnosis and treatment centers in the country.  A neighbor. 

The night was beautiful. 

Good news. 

Hope.

And five weeks after Frazer's surgery, he swam in two events.  Really, some of the medical stuff has been stupefying.

Frazer shaking hands

A week later, I had an appointment.  The appointment would be in 2 weeks (July 12 and 13 as a start). 

Okay.  Amazing.  Flat out unbelieveable.

Another friend was headed to Mayo in MN and texted to see if she could take anything out for Houlder.  She left with two binders.

A tilt table test administered by an old friend who we were in a babysitting co-op with. 

The world felt small and intimate,  but still no answers.

A friend secured the option of going to California to see a doctor about retro-viral illnesses.  In medical terms, we were looking for zebras.

And in the mean time, the headache has abated.  It returns multiple times a day.  He often almost passes out, but he has been to two more swim practices and seen the doctor at UVA again and is having an MRI on Wednesday. 

Vanderbilt has called twice to inquire and has read his binder.  Today they called to move his appointment ahead one day to add in more testing before the meeting with the doctor.

Mayo friend called.  Doctors say just go through ER.

Whacked out medical system.

I think we can put the 10,000 lakes on hold and the Commodores are looking good.


http://www.youtube.com/watch?v=HIRGNzVIz6Y

Porter

 

 

solipsism

Frazer getting ready to swim breaststroke.

Solipsism.

What’s real? 

Do I know?

Writing this blog earnestly began as a means of documenting the work Frazer and I did together homeschooling.  It was a useful, private tool which I only shared with a few family members and friends.  When Frazer was hospitalized in January, we were blessed with caring hearts and friendly concerns.  The blog was a natural extension of how to communicate efficiently with friends. 

It morphed. 

Inspired by some other friends who blog publicly, I opened the privacy controls and posted on Facebook. 

I let go.

And I found that when I sat in the hospital room at night, thoughtful kind responses held me.  Isolated but not alone, friends from long ago and across the country and over the oceans connected electronically.  

It was difficult to grasp.

Dell's graduation, June 9, 2011

I would read my posts and cringe with the verb tense errors and spelling errors and poor proof reading.  My sentiments were released and available for consumption, and I had not had the energy or presence of mind to think longer or better or clearer.

That anyone even read the blog is a tremendous testament to my kids.

A nagging sense of creating my own private Idaho kept rising. 

http://www.youtube.com/watch?v=n7t7cGwN7_0

An inner world in which I could not escape the the medical world and could no longer define the boundaries of my angst.  A world in which I would write lists of things to do and stop mid-way to care for someone or research more or lately just stare into space. 

I began a blog about solipsism.  Was I creating reality that no one else saw?

Porter mite party 2011

Dell during Frazer and Porter's fencing feista!

These months of writing and being with the mystery of what is going on with Houlder has helped me control knee-jerk responses and try to frame what we are living.  I have tried to avoid exisitential rants, pity parties and full-metal jacket scream fests.

But, is it True?

I have been wanting to write about this idea but shied away when David Brooks,’ with his crisp excellent writing and somehow radically moderate ideas, wrote about the dynamic nature of our country -- democracy and republic -- in the The Politics of Solipsism.

http://www.nytimes.com/2011/05/06/opinion/06brooks.html

How could I even begin to discuss this grist mill when he was discussing truly  meaty and pertinent and well-crafted ideas? Seemed audacious to try.

Persistently that word would jump out at a stop light, while waiting for lab work, during swim practice, or while trying to find patience to deal with a 6 year old.  I sensed that we were living a life somehow separate.

People have been unexpectedly kind.  Unexpectedly generous .  Unexpectedly concerned.

So, why think that our experience is so singular?  Why fluctuate?  Why not ride the wave?

Fear?

Egocentricism? -- that’s what David Foster Wallace and Jonathan Franzen would say.

It feels like McCarthy’s The Road.  An isolated life, trying to get through, to manage parental love and being blind to the community around us and that’s when I know I am in too deep, too far gone to find a realistic view.  I find I have created a world in which I choose what to say and how to say it.  How infinitely selfish that enables me to be. 


The ultimate trap of the adolescent mind seeing life beyond oneself.

"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."

 

"He's got a great heart"

6 weeks old, Nags Head 1995

The first great adventure out of the house with a newborn is flummoxing.  Do I have enough wipes, diapers, changes of clothes, burp clothes, and on and on the list seemed.  The books advised and admonished what a capable, ready-to-handle anything mom would have in her arsenal and like a dolt I charged ahead with everything but the kitchen sink.  Portable electric wipe warmer, three changes of clothes with matching pacifiers -- it does not sound like me.  But that's what I did.

6 weeks, Nags Head 1995

And every day seemed huge.  That outing in the stroller could take a good 20-30 minutes to get myself and the baby together to amble to streets of the Fan.

I remember fixing dinner and feeling like I was a rock star.  Making my bed -- whowee nothing stopping me.

By the fourth kid, I was lucky to toss a diaper in my purse with a small thing of wipes.  Extra outfits -- he could always go in the buff.  And my stress in handling getting out of the house was much less.

Not graceful but functional.

Lately I feel like every day is like those first weeks of newborn life.  Everything feels huge and monumental and that I could screw up at any juncture.   I work on one thing and 30 other things need tending.  Nothing is complete.  Everything is half-assed.  And this with the help and kindness of friends who are cooking and carpooling and in general being really nice.

Hiking in Blue Ridge, October 1995

Two days ago Houlder hit his own wall and we went back in to see Tipton.  Thank God that man is patient and listens to my kid.  He is racking his brain trying to figure this out.  I shared the idea to show up at ER at Mayo.  He thinks maybe but let him contact doctor first.  We shall see.

Yesterday Houlder saw the wonderful doctor who performed Frazer's heart repair.  Houlder has been having racing rates, dizziness, wacky blood pressure and shortness of breath.  We are starting to explore autonomic dysfunction syndromes which seem like a grab bag of nothing and everything.  One nice thing Moskowitz was able to tell us is that Houlder's heart is great.  It is good working order and looks strong.  He also feels like the medicine he responded to at UVA would indicate a vascular component but that yesterday nothing seemed out of whack. 

 

 

November 1995 in christening present from Uncle Randy

 Great.

I think.

Moskowitz, Shaw and Tipton had traded numerous emails before Houlder even showed up.  That is good.  Effective.  But, we netted no answers.

Houlder has been a mess all morning.  Almost passed out in shower.  Heart rate at resting high.  Yet, his heart is good.

December 1995

These weird things may mean something or not.

Kind of like, you may need fourteen diapers if you are out for two hours -- or not.

Logic and preparedness seem at odds and my brain is pitiful in collating the information.

But, my wall is crumbling a bit.  Since my last post, I have heard from folks who can ferret out information on Mayo, on other doctors, on other kids who have had similar issues, on friends who have ideas, and encouragement.

It is humbing.

Thank you.

February 1997, last month as singleton, Claremont

Houlder will be sixteen Tuesday.  Birthdays are always a time of reflection on the experience of birth and a newborn.  Houlder was my first baby.   He has been infinitely easy and happy.  I just wish the collective powers I am meeting and talking to and working with could help make that smile come despite the pain.   

William and I are starting to plan road trips Houlder and I will need to take this summer.  We have decided just go everywhere and try to find the answer.  Someone has got to have it somewhere.  We have been slow and methodical up until this point, but I am ready to go.  Try almost any idea and any therapy and any anything.

Houlder March 1998 with Harrison Weise on Claremont

We will need to find a way to make that work for the other boys and for William.  Nanny?  Childcare?  Camp?  Who knows?  Finishing up his report today and hope to start sending it out to doctor for feedback and then on to whomever will read it and see him.  

I am glad he has a great heart.  That is not news.  It's deciphering the mystery behind the symptoms. 

The wall

Typically a day like today -- the first day of summer swim -- has me giddy with excitement.  Today had the potential to be a double header because it was also the final tee ball game of the season for Porter.

While I could shine on about some of the glimmer, that will be for another post when I can get my head around everything.

In a nutshell, there was a gaff in message taking in our home and Houlder's appointment with the neurologist in Bethesda has been moved to June 10.  It was already feeling like Thursday would be a long wait, and now even longer. 

Once I tried to recover from that I called Mayo Clinic in Minnesota. 

Houlder can get an appointment in 15-18 months.

For those who have mistakenly thought I was keeping it together, this watershed moment proved how fragile my emotions are.  I had to retreat to my room.  Some crying in front of kids is permissible but I was crossing a line.

This sucks.

Needs no explanation.

I emailed all the doctors who can hopefully help us expedite this. 

I don't know if I should go and show up at the ER

For those folks who love Houlder and are pulling for him as much as we are, please speak up of any Mayo connections you may have.

This was a Monday.

Johnny Cash performing Nine Inch Nails:
http://www.youtube.com/watch?v=o22eIJDtKho&playnext=1&list=PL3C3B0E0561E8E9E4

Or Diana Krall:
http://www.youtube.com/watch?v=HjXB69HrvhQ&feature=relmfu

You can eat your mistakes

Friday night, William and I headed to St. Thomas for a crepe making class with other auction winners.  Our able and entertaining guide talked about her year in Lyon, France.  It is difficult to think about France and not think gastrinomic thoughts.  From her descriptions of the tinniest kitchen to the luscious crepe stands, we were ready to give it a go.

Houlder too loved the crepes he had in France last year.  He was bummed this winter when his head ache kept him from the day in French class he missed out on the crepes.

One of the sweet ideas that Susan shared with us is that "You can eat your mistakes."

There must be few places in life when one can say that and not be too terribly disappointed -- I mean a messy ill-presented chocolate and almond crepe remains yummy in the tummy no matter its presentation.

I just wonder how people digest medical gaffs.

Not really gaffs but quitting before the roast is cooked.

UVA's Dr. Rust has said that Houlder does not fit into the parameters of what he studies and has recommended the Mayo Clinic.

I've learned the land of 10,000 lakes has some pretty wicked mosquitoes. 

The doctor that MCV heard from is also at Mayo.  The doctor UVA recommended at Mayo has published an article the other doctor.  They have studied headache and POTS -- postdural othrostatic tarchycardia.

You see, despite our requests for cardiology int he hospital, we were told we did not need it.  But, as you can guess, Houlder has been having racing heart rates, wacky blood pressure and even newer and more fun to sit through and not freak out about -- chest squeezing.

I have shared with the doctors in the hospital that my kid is complaining about his chest squeezing.  My favorite answer, "Well he has not been active.  Maybe standing up is too much." 

An EKG after the incident shows he is fine.

Of course an EKG also said Frazer's heart was fine until the doctor using that ultra radically new technology -- the stethoscope -- heard something.  Then an echocardiogram gave the doctors the answer the EKG could not.

Not that this fact is relevant.

I aspire to avoid cyncism but cannot claim to be frustration-free.

So, if we can avoid an ER visit despite having 3 episodes of chest squeezing yesterday, we go to the cardiac surgeon on Wednesday.

I will call Mayo tomorrow.  I research what it will be like today.  I hope to see both doctors that we were referred to.

I wish that I had thought 10 week summer camps were a great idea instead of SRA because I am not sure what we will do with three other children. 

But, we do love SRA and swimming starts tomorrow.  God willing, four Hudgins boys will spend an afternoon freezing their hinneys off to see their friends and coaches and hold onto a glimmer of normal.

For strength and honor

Cause in the pool, we don't eat mistakes, people eat our bubbles.  Hope we have some doctors out there ready for snack time.