One reason for this transition was almost certainly Cassidy herself. It simply became impossible to feel sorry on a deep, emotional level for such a friendly, good-natured, loving, and quixotic child. Of course, people upon occasion say extremely strange things to me. Recently, while I was at the wake of a well-liked Gerlach resident, a very nice lady came up to me and asked if my daughter was Cassidy. When I responded that she was, the lady said to me “I had six children, the last when I was 40. But she turned out fine – there was nothing wrong with her. If I knew then when I know now, I would have been too scared to have her.” When I replied that Cassidy makes an extremely good Cassidy and that we loved her very much, the lady became embarrassed and excused herself.
She needn’t have. I wasn’t upset with her. It’s no crime to not be able to express yourself well under unfamiliar circumstances - and she really is a very nice lady. And what I told her was no platitude: Cassidy does make a very good Cassidy, and we do love her very much. That is part of the unseen transition that happened when I wasn’t looking. Not the love (I’ve always loved her) but the emotional understanding that having Down syndrome doesn’t somehow make her invalid as an individual, anymore than being blind or deaf makes one less of a person. Though I intellectually understood that early on, the knowledge simply hadn’t made its way to my heart until a few months ago.
The second reason was my beloved (and, at least to me, enigmatic) wife Tina, who has never worried about what Cassidy wasn’t, instead always concerning herself with what our daughter was. Tina’s one and only cryptic comment on the matter: this kid’s alright, and this kid’s going to be all right. So, while I busied myself reading Down syndrome-specific books like Groneberg’s Road Map To Holland and Pueschel’s A Parent’s Guide to Down Syndrome: Toward A Brighter Future (both excellent books), Tina was reading general baby books like Murkoff’s What To Expect: The First Year. While I spent my time looking at the Down syndrome child development chart, Tina was looking at the standard child development chart. And a funny thing happened. It became apparent that, like nearly every other child, Cassidy was ahead on some things, behind on other things, and pretty much the same on most things.
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 declared irredeemably 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 a child 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 – and I’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 from conceptualizing). 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, you will 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.