Mr. Sun Is Insane

I have had that silly song from Barney in my head all morning.  I guess because the sun is shining strong this morning--"bright and morning sun--please shine down on me." :)  A poem by Mary Oliver, a favorite, comes to mind:

The Sun

Have you ever seen
anything
in your life
more wonderful

than the way the sun,
every evening,
relaxed and easy,
floats toward the horizon

and into the clouds or the hills,
or the rumpled sea,
and is gone--
and how it slides again

out of the blackness,
every morning,
on the other side of the world,
like a red flower

streaming upward on its heavenly oils[. . .]

do you think there is anywhere, in any language,
a word billowing enough
for the pleasure

that fills you,
as the sun
reaches out,
as it warms you

as you stand there,
empty-handed--
or have you too
turned from this world--

or have you too
gone crazy
for power,
for things?

Lovely, isn't it?  Oliver captures so well my feelings about the sun's warmth and the wonder pricked in watching it rise and fall, especially at the beach when I can see it tuck itself into the horizon. 

But in that last stanza is a word that I have been pondering a bit ever since I spent 4 hours in the ER with Dylan on Saturday only to be told there is nothing wrong.  "Crazy."

I'm sure you've heard the definition of insanity is doing the same thing over and over and expecting a different result.  Well, about a month ago, I was fed up with Dylan's severe problems with constipation and decided that I would stop his mito cocktail because he was doing so well, had a new medicine that would help with his muscle decline/energy level, and it was the thing that was constipating him.  After all, he may not really have mitochondrial disease, his condition may not really be degenerative, and he will be better without the negative side effects from the medicine.

Every few years, I decide that he doesn't have mitochondrial disease and say to myself:  "Let's try him without the cocktail for a few weeks, just to see.'

For a week, he was fine; second week there seemed to be an increase in his mental alertness and a slight decline in energy level; third week, he became more tired more easily and took naps a couple of times daily, but when he was awake, he was the most alert cognitively that he has ever been (the new med's effects).  Week four, and there was more tiredness, more seizures (in addition to the ones I induced so his new doctor could see them in motion) and a fall that broke the kitchen chair in two.  (Almost forgot, his bowels were moving on their own 95% of the time.)

So Saturday, he crawled out of bed (literally) and refused to walk the rest of the day.  He had missed his dose of the new medicine that morning and needed much help in transferring from wheelchair (he wouldn't get up unless the wheelchair was close by) to bed or car.   We went to the ER and he refused to get up at all.  His was leaning to the left and that was the side he fell on, so they took x-rays of that side of his body and took blood and urine samples to rule out infection.  Four hours later, the doctor came in and said that all the tests came back OK.  Maybe he was just sore from the fall.  But that wouldn't explain his body shaking with the effort of transferring or weight-bearing.

So, I knew he was going to have to go back on the mito-cocktail.  Providentially we already had an appointment scheduled with physiologist Monday at Chapel Hill.  And the kind doctor (love his UNC doctors!) confirmed what I suspected.  He needs his mito meds.  His condition is degenerative.  He will need to be fitted for walker as he will have to depend on it eventually. 

Why is it so hard to accept the diagnosis that EVERY doctor confirms?  Most degenerative diseases I know about work more quickly than this one, and I guess that makes it easier to be in denial.  We are not going to beat this thing.  We can slow it down, but it cannot be stopped.  It's a given--like the sun's rise and fall. 

This reminds me of the beginning of the summer--one Saturday afternoon Stan took Knox and Ben fishing while D and I went for a walk and watched the sun set from our front porch swing.  And sitting there with D swinging, I wrote this little poem:

Front Porch

We sit, searching for signs

of life.  The Northern Cardinal, gash-red, answers

the roll:  “Birdie-birdie-birdie”

The shotgun chirrup of the Pine Warbler

triumphs until the AC

whirs in overdrive.

The bench swing idles as leaves shake

out the sun, bees murmuring

nectar-sweet--the breeze relief from heat’s

stifle.  Crickets compete with the wood

thrush’s song liquid, a drink for ears weary of bickering,

carving out of selves, important, work.

Little fishermen return, hands empty, but mouths full:

stories of the fish that floated like a stick,

(too small to eat, too dead to grow)

of twig paintings in mud (shoes lost)

of fingers pricked by poles (too long) precarious

of bleeding knees from climbs (fallen).

Life burgeons as the Stella d’Oros circling

my back step golden trumpeting:  beautiful life. . .life. . .life

Life is beautiful; it is also difficult and unfair and wonderful and inspiring and tiring and tedious and delightful.  Circumstances change; my attitude about those circumstances changes;  but one thing that is even more constant than the sun--which one day will no longer rise or fall--is God Almighty, the maker of heaven and earth:

Zephaniah 3:17 The LORD your God is in your midst, a mighty one who will save; he will rejoice over you with gladness; he will quiet you by his love; he will exult over you with loud singing.

Amen.