There Are Days, Ordinary Days

58  bar rises 29.80 2mph W dewpoint 30 Beltane

New Moon (Hare Moon)

There are days, ordinary days, days you can recall, when your life took a sharp angle turn, or created a swooping curve, perhaps dipped underground or soared up, up into the sky.

It seems I remember, though how could I really, the day I got polio.  I don’t know how this memory got shaped or if it got shaped in the way all  memory does, by our selective recollection of snippets of moments, but here it is.

My mother and I were at the Madison County Fair, held every August on the grounds of Beulah Park.  Mom had wrapped me in a pink blanket and we wandered through the Midway.  There were bright lights strung in parabolic curves and the smell of cotton candy and hot dogs.  I looked out from the blanket, safe on my mother’s shoulder, held in her arms.  And I felt a chill run through me.

Years later I was with my Dad, early in the morning.  We sat in those plastic cuplike chairs in a pale green room.  My mother came up in an elevator on her way to emergency surgery.  Surgeons would try to relieve pressure on her brain from the hemorrhage she had suffered a week before during a church supper.  I got in the elevator and rode up with her.  Her eyes looked away from me, but saw me anyway.  “Soaohn.” she said.  It was the last time she spoke to me.  I was 17.

The evening of my first marriage I wandered down a path in Mounds Park where the ceremony had taken place.  I wore a blue ruffled shirt, music of the Rolling Stones carried through the moist July air.  Butterflies landed on my shoulder.

The night the midnight plane arrived from Calcutta carrying a 4 pound, 4 ounce boy.

The third week of our honeymoon, a northern journey begun in Rome, found us at our northernmost destination Inverness, Scotland.  We had rooms at the Station Hotel, right next to railroad terminal.  It was a cool foggy night and we took a long walk, following for much it the River Ness, which flows into Loch Ness.  We held hands and looked at this old Scots village, the capital of the Highlands.  A mist rose over a church graveyard on our right.

And today.  Planting beets and carrots.  Kate taking a phone call.  The news from the lab about Gabe. Now, after this sunny spring day, life will go on, but its trajectory has changed, changed in a profound way, in a way none of us can yet know.

A Sisyphean Task

68  bar steady 29.78 0mpn SSW dewpoint 22  Beltane

                        New Moon (Hare Moon)

The day has passed as we both tried to get our arms around this notion of Gabe as hemophiliac.  As a dedicated user of the internet, I have looked up and printed out several different articles, brochures, information handouts.  Canada Health Services had some good stuff; so did the CDC; and, the World Hemophiliac Federation.  The amount of data, good data, available quickly astounds me every time I reach out for it.  I have not had a disappointing search, ever.

The emotional problem is this:  lifelong.  This tiny guy, still in the hospital from birth at 35 weeks, now has a mountain to climb every day, every hour for the rest of his life.  This is a Sisyphean task because every time he rolls the ball up the mountain, it will come right back down.  There is no cure.  There is only amelioration.  After looking at the various treatments, I became even more convinced Gabe has the right Dad.  It will require fortitude to climb this mountain,  go to sleep, get up and climb it again.

So, life will proceed.  We will all come to some terms with this and develop ways we can support Jon and Jen, Ruth and Gabe.  We all need to learn a lot more right now.

Daffodils have begun to pop open everywhere, so yellow and white is a dominant accent to green here now.  Tulips should come into bloom any day now and the magnolia is out in all its snowy fineness.  Working in the garden, even for a bit, literally grounds me, draws anxiety out and replaces it with the strength of life’s eternal cycle.

Gabe

63 bar steady 29.86 1mph SSW dewpoint 32  Beltane

                            New Moon (Hare Moon, English medieval)

Outside this morning planting Chiroggia, Golden and some other kind of beets–this morning they were plants, already started indoors.  Nantes Carrots, too.  Same thing.  All four are heirloom seeds, species of long ago, kept alive and healthy by the folks at Seed Savers Exchange.  This also means we can collect seed from any plant we let go to see and expect them to reproduce their parent plant, an expectation only realized among hybrids by cloning or vegetative reproduction.

Kate made a call, after we consulted about where to plant the beets and carrots.  “This bed,” she said, “was not too stressed.  It hasn’t had tomatoes for a couple of years.”

The call was to Jon, checking up on little Gabe, still in the hospital.  As she talked, I only heard one end of the conversation.  “You’re kidding.”  She looked toward the ground, eyes hooded, “You’re kidding.”  You’re kidding is Kate talk for OH MY GD.  Gabe is a factor 8 hemophiliac.  This is the same kind as the Czar’s family, a particularly intractable kind.  Treatable, but tough to deal with over a lifetime.  A chronic disease.

Gabe has the right Dad.  Jon is a model diabetic, controlling his insulin levels and remaining lean, athletic.  He’s suffered from diabetes, fought his own demons with it.  Once he had it fairly well controlled, he developed Addison’s, another immune mediated disease.  He had already added a poorly functioning thyroid gland.  In each instance he has learned about the disease, managed it and gone on with his life, allowing himself no secondary gain or restrictions other than those absolutely necessary for handling his conditions.  Then, on top of that, he began to have aches.  Rheumatoid arthritis.

Jon understands both poles of handling a chronic disease:  the physical and the psychological.  They are equal in importance since a stubborn resistance to manage a chronic condition only makes it worse.  On the other hand, good management creates a sense of psychological well-being impossible otherwise.  Good psychological health makes handling the various regimes more doable.

I’ve never been sure of the old, God doesn’t give us more than we can handle, but in this case I can say that if any one can handle Gabe’s life in a psychologically and physically optimal way, it’s Jon.