Balance Beam

Our days are full.  Frazer and I shuffle from one campus for his appointments to another where Houlder diligently works.  We walk from Ronald McDonald House (RMH).  It is about a mile between campuses, and if we are in a rush we take a shuttle which is nice. 

As I cannot be in two places at once, I have opted to attend all of Frazer's doctors appointments.  The folks running Houlder's program have been accommodating and conscientious making sure I know what is happening with him and giving me the classwork I need to do.  The Mayo doctors continue to amaze me with their joyful, intellectual engagement with Frazer and all his pieces and parts.  He has a slew more tests and evaluations but clearly we have entered a realm of exploration, some answers and more questions.  He remains always the Fraz which is funny because usually the doctors are referring to him as Fraz within minutes.  The Blue-Eyed comments keep coming and he is trying to be better.

Houlder's program is more like the marine boot camp version of mind over matter.  It is not always pretty and is never easy.  There are rules.  Lots of them.  The most important ones involve when it is okay to call for medical help.  They are the following:  Fever of 102.8, protruding bone, unconscious, buckets of blood, or sucicidal.  Otherwise, kids are considered well and need to move through pain.  Unfortunately for Houlder, he has a cold or flu type thing.  I am staying quiet and telling him that he has to deal with it.  It is interesting to watch.  And, I think if he barfs during class, the folks may decide that is more than a pain behavior.  If not, it sucks for Houlder but he will not expire even if he feels like it. 

Those who love Houlder and care about him are not allowed to support "pain behaviors."  What this means is we stay neutral on everything.  We don't acknowledge him if he is in pain, and we don't ask him how is.  Seems cruel.  I am as on-board as I can be as the world has not come up with a better plan for chronic pain; mental boot camp is what Mayo is serving up.  He does biofeedback, relaxation, PT, OT, Recreational Therapy, homework, classroom work, the whole thing.

He is determined, successful and living his life just with pain.  

One of the concerns the leaders try to enforce with the parents is not to expect perfection in ourselves and our kids.  I would not put me in that category, but I am not easy.  I expect hard work and kindness and family.  But they are concerned we are worried about what others think.

I was able to share that yesterday as Frazer was in his boxer briefs presenting his backside to the doctor, I looked over and saw a HUGE HOLE in Scooby Doo!  It never even occurred to me to have an underwear check before leaving the room.  Silly mom!  Not rocking the perfectionist presentation there.  The pair has been dispensed to the trash and Frazer's breeches today are whole.  The class laughed agreeing that my issue may not be looks.  I am sure there are issues.

I want so share the value of this program even though it hurts to see someone you love suffer.

There is a young woman Houlder's age in the program.  Until two years ago, she had been developing normally.  Her intense and rapid decline into a wheelchair and no speech had doctors everywhere wondering.  In December after a brain biopsy which is a risk by itself, the neurologist told the family to bring in Make-A-Wish.  Plan for the end.  For whatever reason, she somehow got one last evaluation before deciding they were waiting for her death.  One doctor questioned the previous doctors.  All them were at Mayo.  Brainiac throw-downs. 

What does a parent do?  How does a parent decide?  What would I do given the idea that mind of matter might work or plan for her final wish? 

This mom and daughter are a team -- I have goose bumps just typing that. 

She entered Houlder's program using a walker after proving the previous week she could get out of the wheelchair which basically was testing this one last theory. 

Could she hang with the Commandant (who is loving but strict)?  Could the mom just take away the walker?  The bigger question when you are in these groups is, could I? 

Last Friday -- six days ago they took away her walker.  After a struggle on the floor, she was offered PT, go home or a nursing home.  She got up and walked to PT.  Yesterday, she ran. Ahead of the other kids.  Her insight guides the group.  Her humor is contagious. 

Do we know that we are greater than the sum of our parts?  I wonder.  Is this faith?  Hope?  Love?  Fate?  Her recovery generates more than Hitchens-que theroretical explanation. 

Four weeks ago the doctors thought she would die.  The scarring in her brain.  Her lack of muscles.  Her cognitive loss.

Every day I see her, I weep.  She is not without pain, but she is winning not the pain.

This mom has become a hero to me among many incredibly brave, relentless parents.  Her laughter is infectious.  Her spirit unflagging.  Her soul accepting. 

Were I called upon to be that strong, would I?  Could I?  Should I?  These are the dark of the night expository essays.  Does an answer matter until the question is asked?

There is grace in this family and our group who celebrates these remarkable achievements as well as the simpler, quiet ones which just involve standing and walking to the classroom -- all with pain. 

And my sons have witnessed a friend rise like the phoenix only stronger and bolder. 


Hail to the Chief!  Or whatever one says to the bossy military leader.