geppetto's bench

8/8/2019 Geppetto's Bench

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Like nearly every other child. Don’t get me wrong: I’m not deluding myself.

Cassidy’s emotional and intellectual development may – no, most likely will – in many

ways freeze when she is four, eight, or twelve. They also might not. She may have

serious health problems beyond her current heart issues. Or she might not. For months

these facts ate away at my soul; the soul of an idealist, a worrier, a preparer obsessed

with his family’s complete independence from a society he had personally declaredirredeemably corrupt… and that he now desperately needed for his daughter’s sake.

Having a child with Down syndrome seemed like an unbearably cruel joke played upon

me personally by God, one of those awful “teachable moments” college professors and

politicians are always banging on about. Everything was lost. Everything I had worked

toward, pointless. My dreams, empty. I was filled with dread at having a child that could

never live up to my ideals, and terrible guilt at even conceptualizing such a cruel thought.

My idols shattered, I became as I told my friend Elizabeth Jackson, “ideologically up for

grabs.” It was for me an extreme admission of hopelessness.

Then, like a quiet voice in the darkness, the transition. Reasons why God had

done this that were not at all cruel, but loving (Though not easy. No, never that: it isn’t

the desert way.) Was I not raised alongside of a disabled brother? Who better to raise achild with Down syndrome but a father obsessed with personal independence? What

better way to the test a man who had always claimed to be a champion of the individual,

than by giving him a child whose individuality is predetermined? (As are all men’s, but

you surely know what I mean.) What better place for such a child to grow than a small,

odd community more accustomed to eccentricity than normalcy?

These things made sense to me. And, by suddenly clicking together, I found

myself more at peace.

Finally, two or three months ago, I got over the tragic death of a daughter that

never was, but whose non-existence I felt as bitterly as anything I had ever felt in my life.

Let us call her Elisa, after my real daughter’s middle name. I had big plans for Elisa. I

spent endless hours at the intellectual equivalent of Geppetto’s bench, carving out my

imaginary Pinocchio daughter. She would naturally be highly intelligent (as I flatter

myself into thinking I am), extremely naturally healthy (as I have fortunately always

been), and extremely energetic (as I am annoyingly so). Elisa was going to continue my

intellectual legacy after I died, crafting works that celebrated rural self-sufficiently and

decried urban duplicity. She was going to get the college degree I never got, and then

become the young traveling adventurer that I, perpetually at my small-business

workbench, never was. She would continue the epic struggle to build a multigenerational

Jerusalem from sand and rock that is Midian Ranch. Only she’d do it better than I ever

could have, because she would be better. She would also have all of the children that I, an

autumn father, was too foolish to have when I was younger and stronger.

Elisa… no, Cassidy was going to be a cross between Lara Croft, Ayn Rand, and

Wonder Woman. I was certain of it; as I’m sure all men who father a beloved child are

certain of such things when they hold that child in their arms for the first time. These

dreams were all dashed to pieces 30 minuets later with two words: Down syndrome. And

so was I.



In my defense, I didn’t get even an hour to enjoy being A Father before I became

A Father Of A Poor Retarded Child. It was terribly… abrupt. Subsequently discovering

that my daydreams were those of a self-centered idiot didn’t help, either. There are only

so many unpleasant revelations that a sane, solid, and rational man can have about his

own character, life, and worldview in a very brief period of time and remain stable – andI’ve never claimed to be entirely sane, solid, or rational. So, for a time, the traumatic

“death” of Elisa hovered in the background of my love of Cassidy, though I did not

consciously know it. It took some time for me to sort the whole thing out. To quote

Wordsworth:

Was the worst pang that sorrow ever bore,

Save one, one only, when I stood forlorn,

Knowing my heart's best treasure was no more

Only, unlike poor William, I was quietly mourning the death of a daughter that

never was outside of my own mind, rather than a real one (a horror I recoil fromconceptualizing). And, in mourning phantasm Elisa, I was doing Cassidy the worst

disservice possible. I was discounting the possibility that she actually was Elisa: in her

own unique way, better than me. Purer, and less intellectually weighed down with

philosophical and ideological baggage. Lighter, freer, and perhaps even continuing a

legacy that I haven’t even fully grasped yet.

That was the final part of the transition: grief for what-wasn’t passing away, to be

replaced by love and quiet optimism. I’m pretty sure that this a normal experience for

thoughtful parents of children with Down syndrome (and I pray that we all are just that

about our children: thoughtful). In fact, award-winning Sesame Street writer Emily Perl

Kingsley said it much better than I ever could:

I am often asked to describe the experience of raising a child with a disability - to

try to help people who have not shared that unique experience to understand it, to

imagine how it would feel. It's like this...

When you're going to have a baby, it's like planning a fabulous vacation trip - to

Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The

Michelangelo David. The gondolas in Venice. You may learn some handy phrases in

Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags

and off you go. Several hours later, the plane lands. The stewardess comes in and says,

"Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm

supposed to be in Italy. All my life I've dreamed of going to Italy.”

But there's been a change in the flight plan. They've landed in Holland and there

you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy

place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new

language. And you will meet a whole new group of people you would never have met.



It's just a different place. It's slower-paced than Italy, less flashy than Italy. But

after you've been there for a while and you catch your breath, you look around... and you

begin to notice that Holland has windmills… and Holland has tulips. Holland even has

Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all

bragging about what a wonderful time they had there. And for the rest of your life, youwill say.

"Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that

dream is a very, very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may

never be free to enjoy the very special, the very lovely things ... about Holland.

geppetto's bench

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