Tuesday, January 24, 2012

Schuyler and Isabel: Message without Words

"...She was broken somehow, we knew that.  But she wore her brokenness like a veil of stars."
                                                                                                            --Robert Rummel-Hudson

Every journey is different.  Every person is unique.  Every disability is its own story.

Within the general categories of Down syndrome, autism, or cerebral palsy, live the individuals who in spite of some similarities of symptoms are still as varied as the hues of a summer day.

I often consider, therefore, when I write of our experiences with Wade, that our travels do not define either Down syndrome or disability for all others.  We can only describe what we know, what we are learning on our own personal road of discovery.

And, yet, it is through the open doors of other parents that we are also allowed to partake of many different journeys which awaken in us the seeds of affinity and compassion for a broader scope of humanity than we could have imagined.  It is a world of unusual richness and vitality, of brokenness and heartache, of truth and paradox.

Out of this tangled world of ambiguity, Schuyler's Monster comes to us--the memoir of a dad and his beloved daughter.

"It does not do to leave a dragon out of your calculations if you live near him," Tolkein has said.

But what about the monsters you can't see?  You know they exist because you can see what they have done, but you don't know what they look like or who they are.

A known monster is still a monster, but you can at least plan your attack, assess his weak points, and rally your own strengths.

But how do you fight the Unknown?

This is Schuyler's story of the Monster who stole her voice, the Monster who is so rare that few have ever met him.

And as we read her story, our hearts ache with the raw voice of her father who feels that they are fighting the Monster with swords made of rubber.  It is a story of sadness and joy, of anger and honesty, of doubt and of hope.
On any given day, I felt like Schuyler was visiting the rest of us here, a tiny being not of this world but trying as hard as she could to fit in.  But it was different on Halloween night, watching Schuyler with her gauzy butterfly wings and her crazy pink hair and that braying, unashamed laugh, dancing to some wild and perfect music that the rest of us weren't allowed to hear.  On a night like that, it was even easier for me to imagine Schuyler taking flight, her pink Converse hi-tops leaving the surface of this grand rough world for the last time.
I could imagine, with heartbreaking clarity and hand outstretched, watching Schuyler fluttering happily back to wherever she came from, whatever place in the universe exists where bug fairies speak in laughter and where sad, broken fathers aren't welcome.
Rummel-Hudson speaks openly of his spiritual quest, calling himself an agnostic, but sharing his bitter angst with God after the diagnosis as well as his tender longing for a life with greater purpose, with something more.

"She is the source of my joy and my sorrow, and for all my resentment at him for giving her this burden, it is nevertheless when I am with Schuyler that I feel closest to God."

And that says it all so well.  For in the enigma called Life, the journeys which bring us the closest to God are not necessarily those which are easy nor those which are easily understood.

Roy Richard Grinker, another father on a different journey, came to a similar conclusion as he wrote about his daughter Isabel in his book Unstrange Minds:  "...there is something profoundly meaningful, if not spiritual, about being the father of a child with autism that has pushed me to consider lofty, abstract principles of life like truth, beauty, and goodness."

And I wonder as I read these fathers' accounts, separate and yet entwined, could it be possible that those who have no words sometimes speak with the greatest eloquence of all?

Tuesday, January 17, 2012

Art Worthy

It's a photography exhibition from the United Kingdom whose gentle mission has universal appeal:

"Look at the individual and not the condition."

Every so often I read descriptions which delicately refer to people who "suffer from Down syndrome".  And every time it makes me laugh because I wonder about the people who seem to "suffer from normalcy".

Join us in watching this slideshow where no one seems to be suffering from anything and where the individual is recognized before the label.

Bailey and the other photographers continue to document new images of Down Syndrome through a generous grant from GlaxoSmithKline in the UK.  To find out more information and see the photographs, visit: shiftingperspectives.org.

Tuesday, January 10, 2012

Bless Winnie the Pooh and Me Too

Wade had surgery today to have the fourth tube inserted in the right ear, which was once again full of fluid, and a temporary patch over the perforation in the left ear.  We are looking forward to the improvement of both his hearing and ours.  One day last week after we had turned his (VERY LOUD) music down to reasonable levels, I came into the living room to find him up on the bookcase with his ear pathetically pressed to the speaker.  Sad.

The doctor added some type of adhesive to the top side of the tube this time to encourage a longer period of function.  Other than super glue, he said, that's about all he could do. 

The perforation in the left eardrum is larger than I had envisioned and has really not healed over much as we had hoped since the last surgery.  It currently encompasses about 60% of the surface space.  The patch will last around six weeks during which time we hope it will encourage new growth and healing.  The patch itself will facilitate better temporary hearing by providing more surface area for vibration.  

Dr. Vickery said that Wade had better add himself and his left ear to his daily prayers for Winnie the Pooh and Mickey Mouse.  

What a nice nurse with an interesting finger tickler!

Off to surgery.  Great ride.  They treat me like a prince!

Ahhhhh!  Breathing in the essence of candy-infused sleep medicine.  (Wade loved that and happily breathed it until the mask fell out of his sleepy hand.  Then he giggled and went off to sleep.  Happy medicine at its best!) 

Home again.  Relaxing with Winnie the Pooh.

Monday, January 02, 2012

He Said What?

It's bedtime.

Wade pulls off his shirt, points at the two little bumps on his chest and says proudly, "Pickles!"

My question is this:  if I remind him of the anatomically correct term, will I be sorry?