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