skip the light fandango

 http://www.youtube.com/watch?v=CJIVz9nYx7I

Annie Lennox always struck me as a together woman.  Annie probably would not have tripped three steps from the bottom down her own front stoop on a sunny Sunday afternoon 7 weeks ago. 

Eight plates and a screw.  Sounds like a drink.

Feeling thirsty?  Apparently I was parched.

A swift ambulance ride with such a nice paramedic who was concerned about gently taking off my Danskos.  When I told him he could cut them off, he balked as he knew they were expensive.  Haha.  Got love that.

The last 7 weeks have been a blur.  It took me about two weeks to realize how serious this leg break was.  William conveniently kept the meds coming quite regularly to keep me from trying to get up.  Lacey, my mother-in-law, managed the chaos of four kids, birthday parties, meals which were delivered, carpools, playdates, and exams.  A friend introduced me to Pinterest.com and between Houzz.com and Ziplist.com, I redecorated, renovated, bought presents, made presents, made meals by clicking on a photo icon and creating little fantasy notebooks of what my life would be like if money were no object and time were not an issue and I did not have a bum leg.  It was entertaining.  I found Hanging with Friends and had a great time getting my butt whooped around the globe.  We managed Christmas, said adios to 2011 and visited friends with NYC and New Zealand.

I griped and tried to find the the lesson or the moral, but Aesop escaped me.    William again shone brightly as Daddy superstar.  As Porter told one of our guests, "When Mommy started the leg drugs, Daddy became in charge."  Go ahead and laugh.  We did.  Will rocked and continues to be amazing.

I imagine the lesson was that we need each as we walk this earth.  Kindness matters.  Friends matter.  Calling matters.  Note cards still matter.  Facebook matters.  Family matters.  In the past I had tried to be a person who recognized when someone might need a hand or a meal or a call.  This year I really was not able to do that but generosity only works when someone receives with grace.  Grace -- we began the year and ended learning grace by receiving so many thougthful meals and words.  We remain in awe of others' capacity to reach out and help.  In awe and full of gratitude.

Thank you.
  

There is moonight and moss in the trees

When I began driving myself places or was old enough to ride with other teen drivers, a sunshiny day with awesome Southern rock had my long hair loose and my vocals alive.  I remember feeling the world was open, available and possible. Singing out loud, off key but fully enthusiastically, I felt joyful and a sense of divine with the world.  Often in the company of a friend or even alone, I would feel inspired by the weather and music -- a ripeness of hope.

This past Saturday was one of those types of days. 

As I drove Porter and Dell to their activities, my dad stayed at home with Houlder.  William was holed up in the UR library.  I drove with my window down, waiting for that song to beckon me out of the grips of our health conundrum.  I enjoyed my kids, their banter (or bicker) and discovered a love of tee ball and the humor it can provide.  Not quite as funny as damnyouautocorrect.com but as good as mites' diving off the blocks at a swim meet.

So, on I drove expectant for that moment.  Cruising the digital dial hoping to land on that song that might provide a moment of relief and abandon, I was denied. 

It felt so normal.

What we are figuring out is not about me, but it is about how I can mother and advocate and love.  It is not for me to find a break, but my man-child and sweet one certainly have not.

Houlder spent a week that many don't want to experience.

He hurt.

He had pain.

He has started to lose his hair from the stress of the pain.  He is fortunate in that he has plenty of hair.  But, the dermatologist explained that the body redirects its energy to other places when in distress.

The skin on his right foot pinky toe start to turn yellow and peel off.

Very attractive.  No photos.

Immediately, it was thought to be fungal thingy but in further questioning, possibly yeast from the steroids he was given.  The rash showed up the day after he took his first dosages (there are a lot the first day).  Waiting for results but treating with yeast meds and it is clearing.

And, the dermatologist is smart AND really nice.

Last Monday night I had a phone call from pediatric neurologist we had seen at St. Mary's.  He felt Houlder has a neurological problem but that we should try a bigger city with a university hospital that has a multi-discipline approach.

What's the expression?  Punt?

He did not have any recommendations. 

He said that the two other radiologists did not find the same thing the first guy did who did call William back to say that he did not know what it was and did not know what to suggest other than counseling.

Hey, this health care is the best in the world.  We are feeling it here. 

I have an appointment at a headache clinic in Bethesda the end of the month from a friend's suggestion.

We still have not heard form UVA.

We look at more places.

We wait for pediatrician to return from vacation.

Frazer met with neurologist who spent a fair amount of time examining.  Learned he cannot heel walk or cannot walk toe to heel.

Okay, he has managed 11 years.

She felt a need for spinal and head mri as the pediatric neurosurgeon did and got it moved up to this Thursday.

Once he has that, he has an appointment with neurosurgeon in afternoon.  I am taking Houlder along as well.  Our ped. has sent Houlder's file along to this guy.  Hopefully, he can glance at Houlder as well.

Assuming we don't snag yet another diagnosis for sweet Frazer.

Frazer's neurologist was curious about the virus that triggered the pericarditis.  I mentioned Houlder.  She asked all these questions not knowing one of her partners had passed on us.

Not sure what to do.  Explore with her.  Just not sure.

My brain rumbles and creaks with all these thoughts, ideas folks have shared from diets to poisonings to allergies.  I look at places to go, try to manage kindergarten life, selecting classes for Dell for ninth grade, figuring out what Frazer has to learn in order to pass the test -- what?  Am I saying that?  In order to pass the test for fourth grade?  Yes, I am. 

William is studying every chance he can for this CFA thing.  Our timing is certainly not ideal, but sometimes you just have to plug away.

The meals have been awesome, the calls appreciated, the emails and FB's read but not all responded to, the laundry continues.

Sunday after church as I hurried home with Dell and Frazer, my church buddies, the weather was overcast but still worthy of windows down.  I wanted to get home because Houlder had a friend coming to help him with math.  Trying one problem at a time.  He is still trying to do work from before March's spring break -- two months ago.

And, then serendipitously I switched radio channels.  An anthem.   The harmony.  A belt out your troubles song with good guitar picking and liveliness.  A live recording.  I turned up the volume and sang out. 

Dell asked to turn it down.

I said, "Nope." 

Singing off key.

With joy.

For hope.

For ideas.

Four my boys.

http://www.youtube.com/watch?v=knbqBAuEphw&feature=fvwrel

Make it up as we go along

"The less we know about it the better
We make it up as we go along" Talking Heads

This song has anthem-like qualities for me.  Love, the unknown and home.  The journey of life.

But, the ability to keep grasping "to make it up as we go along" is fading.  My willingness to float in a sea of uncertainty has become an anathema to me.    While I should be singing Gloria Gaynor's 'I will survive," I am feeling more like Eeyore:

"It's snowing still," said Eeyore gloomily.

"So it is."

"And freezing."

"Is it?"

"Yes," said Eeyore. "However," he said, brightening up a little, "we haven't had an earthquake lately." AA Milne

The earthquake feels right around the corner.

Houlder finished up the MRI of his spine last night at 7:50pm.  I had inquired numerous times throughout the day if we would be discharged after the test.  It was all unknown.  Back in the room at 8pm, Houlder's pain edging back into too much discomfort, the doctor, who had been there all day but not come in dropped by, came to discharge us.  At 8:30pm.  When she asked Houlder if he was ready to leave, he said no.  She then said "It's not your decision; it's your mother's decision."

Parenting 101.  Don't ask a yes or no question if there is an answer you will refuse to accept.

I understood her point but the willingness to filter and ignore was slipping.  I said, "But do I have a choice?"  Good manners kicked in and I mentioned to Houlder how nice it would be to sleep in his own bed.

I was able to secure pain management to get us through today and maybe tomorrow and felt we needed to go.  Home was where I wanted to be.

Surprised to be discharged in the dark schelping bags to the parking deck alone but grateful as well.

I am going to started pulses, temps and blood pressure tomorrow every 4 hours just like at hospital so that I can manage everything.  I was an English and sociology major, but here is my plug for liberal arts colleges.  I think this info might help, and I believe I can do it.  It's that liberal arts education sneaking in tripping the think button.  My step father taught me how to do all these a few weeks ago, and it's game time.  Stepping way out of the comfort zone into health care management.  No Joyce or Milton here.  No Chopin or Morrison.  No lyrical way to compose, numbers, data, measurements. Just the facts reported please.

An added doozey yesterday came for Frazer.  The endocrine called and told us that Frazer is producing growth hormone.  I frankly am surprised.  He thinks he should be on the hormones anyway.  We are trying to figure out what that means with the chiari.  William and I are still trying to figure this one out.  There are health risks when you give the hormone if the body is producing yet.  Again, research, question, explore.

"Make it up as we go along."

Frazer meets the neurosurgeon today.  I was able to score his CT scan from when he was 10 months old at hospital (2000) while Houlder was in his room.  They were in a bin to be destroyed.  Cannot complain about that luck.  Small Pooh moment.

I have been up since giving Houlder meds at 2:45 trying to remember that this may be a another starting point.  In fact that is all I believe.  It is some information.  For those who think we have abandoned the hunting and gathering society, I contend this mother is gathering tomes of info, test results and the lot.  I found a cool Rx app for the iphone to program the meds and an even cooler one  at the app store for macs to keep track of medical records.  I have lengthy notes but felt there was a better more concise way to present the info.  I hope I have stumbled onto the power of the apple.

Houlder will need to trudge with me to these appointments as I don't think he can be left home alone.  William's parents are coming up for Grandparents Day at Collegiate and I am hoping will feed Porter lunch.  Frazer will head to neurosurgeon with us.  Dell has snagged a ride home with our neighbor.

Last night when Houlder and I got home about 9:30, we feasted.  Several folks had shared their love and kindness, and we had delicious and ample pickings.  We are so thankful.

I am hoping Friday to hop like a bunny to find some treats.

This Must Be the Place (Naive Melody) Talking Heads
http://www.youtube.com/watch?v=Cqg_ZGcuybs

Tuesday afternoon I am just beginning to see

pencil sketch mode of photo booth as Houlder watches a 007 movie

The Moody Blues.  Feeling a bit moody and blue.  The song is soulful, questioning, and curious.   Understand these emotions.

Long night, moderate pain relief, no breakfast for the boy-man as he got carted to a lumbar puncture.

pre-puncture

It was a little study in science and technology and medicine.  Using an x-ray, the radiologist guided a 3.5 inch needle in between lumbar bones (vertabrae) and remove a sample of cerebrospinal fluid to test for viruses, lyme disease -- lots of good stuff.  The test also can test the pressure of the fluid in the brain.  Pretty amazing how so much has been uncovered and figured out.  I literally watched some of Houlder's spinal fluid squirt out of his back.

It was wiggy.

In typical Houlder fashion, he asked to see the needle, the fluids, how he learned how to insert the needle.  The kid is made of sturdy stuff. 

Comfort came in unexpected ways.  The radiologist chatted with Houlder and asked him about his life.  Of course swimming was the main topic.  So the doctor says, "I went to this small college in Ohio."  Houlder, "Kenyon?" Doctor, "Dension."   He was a grad of the school who just unseated KC's 31 year run as DIII swim champs.  Oddly, I was at ease.  Chatting about the schools and life and what not.  The lumbar puncture only took 10 minutes.  Small comforts.

Back in the room, a sweet friend brought lunch and smoothies and good conversation.

But, the pain was there.  They had not wanted to give Houlder meds before the lumbar puncture so his pain was pretty high before the test.  The good news is that he did not get a spinal headache.  The rough news was figuring out the the mixed messages.

In a nutshell, we are still waiting for results.  We have some but still need more which takes times.  But I was feeling frustrated as I watched Houlder still struggle with the pain.  As he had to explain to another doctor how he was feeling as he struggled to just get out of bed to stand.  A huge boy-man who needed support to walk.  Poor guy.  The hospitalist explained this afternoon that the hospital is only a place for acute care.  Even though Houlder needs care and observation, he should be moved to outpatient fairly soon.

We were a bit surprised that hospital is not the place for care -- or only rather acute care.  The peds wing is pretty empty.  My mother-in-law heard all this.  We were both wondering.  Frankly even the doctor herself was.

As I helped Houlder and got the nurses to get him some relief, I simmered.  Houlder asked me if we would go home tomorrow.  I said that I thought so.

"Something, calls to me,
The trees are drawing me near, I've got to find out why?
Those gentle voices I hear, explain it all with a sigh."

http://www.youtube.com/watch?v=bPLWBhNW3FM

"With a sigh" I was stewing with the conflicting views when our good primary pediatrician came in to visit and check.  On his day off.  He sat for 1.5 hours.  He expressed what needs to be done and how no one in town is doing it.  The best part was taking the time to explain that this is a blip in Houlder's life even though it is hard now.  He asked Houlder how he was feeling.  Houlder shared how he was sad to be out of swimming so long that he did not have the chance to move up to the senior swimming group with his buddies.  Houlder asked so innocently if the pain which had come on so quickly could how just go away.  Our pediatrician took time to listen.  He told us about the research he had been doing.  He told us he had added Houlder to the prayer list at his church.  He validated Houlder by telling him that what he is experiencing is real.

Another gift came to visit. Three of the adults Houlder had spent the last three summer working with at Riverside Outfitters tree climbing camp came by.  That generous time lightened Houlder.  It connected him to his life.  Houlder's camp nickname is Gulliver.  In his absence, they have named a tree limb Gulliver.  He  loved hearing how the amazing Jocelyn has made it to tree climbing champs in Australia, how camp is set up but mostly hearing how they wanted him to get well and that there was a place for him.  Kind of a "Norm" moment.

Right now we are waiting for a shift change and the pediatric neurologist to come by.  And, our pediatrician is back, waiting with us.  Talking to Houlder about books and James Bond movies (Houlder has been watching them on Netflix).  Hopefully there will be another test tomorrow and a connection to another place that is looking to solve a bunch of disparate symptoms and not only play the statistical odds. 

"I've got to find out why?"