Wednesday, January 11, 2017

Paradoxical Unity

Kenny's favorite phrase lately, "Paradoxical Unity", has emerged from our ongoing study of the Tao Te Ching.  Today I think I grasped the reasons why.

We are in Chicago on this blustery winter evening, ready to take our leave tomorrow morning after a longer than expected pre-operative appointment at Shriner's Hospital today.  Due for surgery late next month, this was to clarify the procedure after ongoing conversations with our orthodontist back home.  

Clarify?  How about horrify?

That's more fitting, particularly for a cleft lip and palate patient whose childhood in an orphanage included "dental care" consisting of a cup to hold your tooth after being extracted with a pair of pliers.  

Seriously.

Kenny's first dental procedure at home was a mere week after arriving as an infected molar had rotted almost to the gum and had been hidden from caretakers.  A hearty combination of Valium, Novocaine and Nitrous Oxide did nothing to soothe the anxiety as Dental Demons from the past caused the fight or flight response to rise up as if he were walking toward the gallows.  

Today's reaction was, thankfully, far more rational and contained as we listened to the details of his next surgery which will be no walk in the park.  Our special young man "won" the lottery by being one of the 25% of cleft lip and palate patients who will need to have corrective jaw surgery, and he will need not one, but TWO!! Ding Ding Ding!  Where were the showers of balloons and ticker tape?

What we thought was going to be a far more minor procedure has turned into a much harder one.  Nine teeth will be extracted.  Yes, you read that correctly, nine...five wisdom teeth (See, I told you he was special!!) and four others toward the front.  That is bad enough, but wait, there's more!  And no, it is not a cool Ginsu knife set!

He will need surgical assisted palate expansion, which we knew about prior, but were shown today that it will be more involved than originally thought.  They will cut through his upper jaw bone under his lip and slice his palate in three swaths all the way to the soft palate, then horizontally across the outer upper gum line as well.  

Sounds like fun, eh?


Kenny's Upper Jaw and Teeth.  Looks like the kid never had braces for four years, doesn't it?  What is missing is the two other molars that erupted from the middle of his palate that were removed awhile ago.

Kenny's lower jaw mold. 
A couple of years from now, this will all look very, very different!


One might think that was the most difficult part of the day, but there were more painful moments that spoke to a lifetime of difficulty ahead, not the temporary medical treatment.

At 18 years old, we are trying to nudge Kenny toward owning pieces of his life.  Things one would expect an 18 year old to manage on their own are beyond Kenny's ability, as Fetal Alcohol Spectrum Disorder (FASD) has robbed him of so much.  He and I are taking baby steps to learn how we will team up to allow him to be as self-directed as possible, while still having the assistance he needs to succeed. We are learning how to comfortably present his disability to others and explain my intervention from time to time, and my presence in places and spaces where it would no longer be expected.

Walking up to the registration desk today, I stepped back and let Kenny handle the process.  I can't begin to explain how painful this was to witness, how impossible it was for him.  He couldn't recall his birth date or Dominick's phone number for the forms, he was going to blindly sign everything without knowing what it was asking of him financially, he couldn't remember how to spell his own middle name.  Then he walked away from the counter with their pen in hand, having left behind the plaster impressions and CT scan disk which was needed for his appointment.

Nasal airflow testing as a baseline pre-surgery.


I stepped in, of course, as the Registration clerk looked oddly at him, and I explained that Kenny had brain damage and was practicing new skills.  The quizzical expression softened and compassion arose, and I thanked her as I slowly walked Kenny through the process, dipping in and out as needed to explain what he needed to do, and reminding him to use his new iPhone (Thanks Madon!!) as his second brain to look up information he couldn't recall.  Having an invisible disability means others have no idea why you are unable to perform ordinary tasks.

He then returned to his seat, where he proceeded to put headphones on, rendering him unable to hear his name being called, and watched Sponge Bob videos laughing out loud like a giggly 8 year old, enthralled by the antics of his favorite cartoon.  His dysmaturity is something many people don't immediately catch, as the "Paradoxical Unity" of Kenny is unparalleled.  You see, Kenny is all of this described here, and more, much more.  He is an expert in Biblical history and a keen follower of politics and American history.  He can speak more intelligently on many subjects than most adults can.  He has a sharp mind for business and can analyze P &L's faster than most entrepreneurs.

Kenny is all of this and more.  He is wise, and lacks common logic...he used the aforementioned cell phone as a hammer while we were on vacation and was stopped before doing damage.  When asked why, he said because it made sense to him in the moment.  Kenny is intelligent, and yet lacks the ability to recall the simplest of information correctly.  Kenny is equal parts old sage and pre-pubescent boy.  Parenting ALL of who Kenny is can be an exhausting moment-by-moment job, attempting to keep expectations appropriate for wherever he is developmentally at any given time.

And though very slowly the maturity pieces will develop a bit more, none of this will ever improve.  When making  conversation, a nurse asked if he was in college and spoke about how his mom was doing him a favor making him do things on his own so that when he moves out he can live well on his own and be responsible...and yet Kenny will never have the privilege of safe independence, it will be beyond his grasp if he is to be out of harm's way.  These kinds of casual remarks are painful for our family, and we are only beginning to learn how to deal with them.

There again, the Paradoxical Unity that is Kenny shined through when, over lunch, we talked about that conversation and I asked Kenny if that was hard for him.  He gently smiled at me and with great kindness said, "No, Mom, it was OK.  She has no way of knowing that my life will be different, and in some ways that is good.  That means I am acting normal in the moment, and she thinks I am like every other 18 year old.  I have no need to correct her or embarrass her, it was an innocent mistake and making a big deal about it isn't necessary.  She was a sweet woman."

The Paradoxical Unity of our son is a blessing of enormous proportions.  His graciousness continues to be an example to me, his intellect belies the struggle.  He is the Ultimate Paradox...he has a sense of togetherness and soul deep contentment that many yearn for, when outwardly it might appear he is a scrambled mess.

He is broken...oh so broken...and yet so perfect.

He then went on to say, "Sometimes though, I really don't know what to say and I need to work on that.  I mean, how do I explain when I am 30 that my mom has to be at a doctor's appointment with me because I totally don't get anything?  How can I help other people see that I THINK I am understanding it all, and yet I KNOW I really am not, but I don't KNOW what I don't get so THEY can't know what I don't get."  He then laughed at the circular quality of his statement, and I laughed at the brutal confusing truth of it.

How can we live in despair when we can love and laugh?  We can't.  There are hard things ahead, but we have been spared much of the anguish that many families with children with FASD deal with.  We have not a single behavioral issue, no anger or violence or rages as is so common among this population.  Instead, we have a beautiful, helpful, tender hearted young man who will spend his life dependent on us and others in our family.  He will never achieve traditional success the way other young men do, but he will walk through the world as a gift to others, enriching lives, offering love, and being an example of grace and humility for all.

Kenny's newest pet phrase is as confounding as his brain can be, and it suits him to a "T".  We will face the next phase of his treatment with our "get 'er done" attitude.  We will also face the coming years with the paradoxical unity of our "mismatched" yet still perfectly matched family...acceptance of what is, acceptance of what didn't have to be, and gratitude for what will be.


2 comments:

Madon Dailey said...

Maybe that's it. Kenny will help the rest of us find Joy and Inner Peace, a guru in our time of great need.

B.A. said...

oh yipe. My 14 yr old needs this too. Her lower jaw is almost half an inch beyond her upper jaw but I just can't stand the thought of putting her through this. Her speech is clear and it doesn't bother socially - she just looks very determined and she is! I wish I could truly understand whether it is medically necessary or cosmetic.