I will raise him up

 "In the day-to-day trenches of adult life, there is actually no such thing as atheism. There is no such thing as not worshipping. Everybody worships. The only choice we get is what to worship." David Foster Wallace

In church our priest had the tricky job of trying to discuss a lengthy gospel about Jesus raising Lazarus from the grave.  She connected the gospel and a true story of a Jew who survived an execution, crawling out of open mass grave, knocking naked and bloody on the doors of Christians he knew.  Only one gave him refuge.  This story does not glorify the goodness of humanity but the resilience of the spirit to survive. It was his willingness to remain vulnerable with a broken heart which allowed him to heal.  Later in church we later discussed the movie Ghandi and what allowed his simple act of non-violence to be so powerful and move people towards reconciliation. 

It was a lesson to encourage broken hearts to heal.  What compels us to remain vulnerable despite the self-serving nature of each person?  That is what David Foster Wallace discusses in his profound speech, "This is Water."  But, DFW concludes, we all worship something. He goes on to link this need to believe to our need to think and be aware; "The capital-T Truth is about life BEFORE death.

It is about the real value of a real education, which has almost nothing to do with knowledge, and everything to do with simple awareness; awareness of what is so real and essential, so hidden in plain sight all around us, all the time, that we have to keep reminding ourselves over and over:"

In the face of all that we are trying to learn about chiari malformation and growth hormone deficiency and artial septal defect (hole in the heart) for Frazer and myriad of things that headache can be a symptom of with lesions on the brain, blurred vision, loss of balance and pain --relentless, nagging, persistent pain for Houlder.  We received an email from our pediatrician who we respect telling us that he could not get the neurologists to give him a consistent plan for medication for Houlder.  That they cannot agree in the best way to treat him.  It is almost as if Houlder is to will himself well while Frazer carries on relatively unscathed with multiple labels.

In this dance is where my broken heart lies.  Will's broken heart lies.  Where are the doctors who have remembered DFW's capital T truth -- to keep an awareness?  What are they worshipping?

To me this experience is not just an unfortunate opportunity to examine what is wrong with health care but it brings to light what is wrong with education.  How are we grooming our practitioners?  If a patient presents and cannot easily be placed into a box, is the patient the failure?  If think our educational system -- public, private -- is so driven on measurable, quantifiable results.  We need to rank and compare and not search for answers for answers sake.  We have lost the capital T Truth.  We are good at testing and measuring.  We are good at statistics and making numbers seem to tell us the Truth.  If you are a patient and don't fit into a one to the multiple choice answers, are you no longer sick?  I had thought science was about finding the right question and solving it -- and learning sometimes our assumptions are incorrect.  Have we moved to such ranked existence that failure no longer informs our process but puts us at the back of the line?  Does being at the back of the line mean failure?

Isn't Truth in the everyday?  Have we lost the ability to examine and learn and uncover and figure out. Are we so afraid of being Wrong that we cannot say, "I don't know.  Let's figure it out?"

We have friends who don't believe in a particular faith and many who avow agnosticism.  I won't deny them. For me, the reality that there is a power greater than me and my mere earthly understandings came in becoming a mother.  Nothing has rocked my universe in the same way.  I am not claiming that all people need parenthood as proof that there is something greater.  I had faith previously but seeing Houlder for the first moment has seared into my visual memory and has cemented in me that there is something greater than what I can see and know. 

And, yes I know that thought can deconstructed so easily.  But, it is what it is.  Simple.

Many well-educated medical professionals feel it is reasonable for a kid to drop out of life because his pain is too great to even sit on a deck chair to enjoy the sun is my broken heart -- the vulnerability for this journey.  Our search for relief, for answers, for care.  It is our knock on the door.  Our faith calls us out each day to remain open with our broken heart.  To believe in our capacity to find someone who can heal and therefore allow us to reconcile the frustration, the anger and the hurt.

My head spins trying to synthesize all these elements.  Because we are more than disparate body parts and brain parts and heart parts but a functioning machine with each function depending upon the others success.  We are searching for places and doctors who can help.  We are trying to hold the space for our hearts to remain open to the pain we witness. 

In church we closed with the hymn, "We Will Raise Him Up" which was a call to me to continue to raise and hold the boys -- all four of them -- up.  Grow them up.  Grow them up safely and without pain.  We are looking for the doctors who can go on this journey with us.  We have found some.   But, we need more.  Frankly, we the universe, need more.