There's a poem I like and lately, refer to often. It's called "Welcome to Holland".
It was written in 1987 by social activist Emily Perl Kingsley, about the experience of raising a child with a disability. I've attempted to sum it up here, but can't seem to do it justice. It's really much more profound to be read in its entirety.
Welcome to Holland
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 some horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy a new guidebook. 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, 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."
The pain of that will never, ever, go away, because the loss of that dream is a 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.
Written by Emily Perl Kingsley
It's funny what one little word can do.
Crew was diagnosed with autism last week.
Up to this point, the worries have been fierce and countless. The what ifs and panic. The whys and anger. The guilt, the shame, the grief. Was it something I did? The tears. The "red flags". The "confusing case". The not understanding. The fear. The lack of normalcy, whatever that means. The comparison to others. The dreaded developmental checklists. The isolation. The pressure a woman can feel to do it all right. The blame a mother can put on herself. The punishing pangs of self-doubt. The menacing refrain of anxiety, like a song that skips the verses and just repeats, over and over again.
And yet. These past few years have unearthed the greatest joy I've known. If you know our boy, then you know his light. This thing, this diagnosis - it won't define him. He is still the happy little Crew who loves pancakes, choo choos, tickles, his dad, and me. Like any parent, I'm wildly in love with every bit of his uniqueness and find even the traits that lend a nod to autism intensely endearing. And this chaotic mess of feelings I'm sorting through - they aren't about him. They're about my growth, my journey.
Stephen and I have held tight to each other - mustering strength we didn't know we had, daring honesty and dredging it up from inside ourselves, challenging thoughts and redefining success, learning to put faith in greater places than our own four hands, letting go of fear. It's hasn't been entirely graceful, but it's something, and we're better for it. Our family is better for it. And for that, perhaps this is all a gift.
A couple weeks ago, we went picking for strawberries and raspberries at a nearby farm in Carnation. Crew couldn't wait to help and gleefully chanted the names of the berries over and over as he plucked them from the field. He is 3 and a half, but just really started talking in the last couple months. How good it was to hear him say "strawberry" and "raspberry" over and over again! There I sat in the patch - wanting nothing but this moment - big, fat, salty tears running down behind the camera.
On the afternoon we returned home from his evaluation, once he had settled down for a nap, I padded into the kitchen and began to wash the last of the strawberries from our day of picking, still in the fridge and desperate for some attention. I put on a little Norah Jones, and calmed myself in the rhythm of hulling their tops and slicing them, slowly, one by one. Maybe for jam, maybe for muffins, a shortcake perhaps. I didn’t know yet. I just knew that I needed to be right here, doing this.
Aren't we lucky that every summer there are berries to be picked? In this world of unknowns where none of us are immune to pain, grief, and struggle, we can find those things that help us steady our feet a bit. Those things we can count on. Those things that lend as a harbinger for joy, even if we're not always okay.
There is some relief in all this. We can let go of that breath we've been holding for far too long and carry on. We're going places. Better places than we would have picked for ourselves.
As you may know from a couple posts back, we have, in fact, been to Holland. And it is fantastic.