There is an essay by Emily Pearl Kingsley called Welcome to Holland. It is a piece about raising a child with special needs. I had heard about this piece in various Autism forums and such, but didn't stumble upon it until very recently.
In her essay, Kingsley likens pregnancy to planing a trip to Italy. You buy books about the landmarks, learn about the history, practice your Italian language skills. In fact, you know other people who are also embarking on this trip, and talk and plan excitedly about what it will be like when you arrive. The day arrives, and you board your plane, maps and translation book clutched joyfully in your grasp. After a long plane ride, you land.
"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.
Kinglsey goes on to explain that Holland is hardly unsafe, or full of pestilence and disease. But it's not Italy, the trip you had prepared for all those months. Your maps won't work, your translation books won't work. It's not full of fashion and pasta and the Pope. All of your friends who left on the trip? They are in Italy. You will need to make this trip with some new friends.
It's Holland. Not Italy. But you take a deep breath. You look around. And Holland is beautiful. Not Italy. Certainly not what you were prepared for. But it's beautiful. Tulips. Windmills. Clogs.
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.
I have only very recently come to terms with the idea that we are in Holland. With autism, it's a slightly different journey. My plane landed and for eighteen months, I thought I was in Italy. I was using my maps and speaking the language and eating the food and it wasn't until later that I realized why they weren't working. I had to look, really look, to realize where I was. My son was in a different place, my journey led me somewhere else.
When I was pregnant with PJ, a number of women who are dear to my heart were pregnant with me. I remember heaving our bumps here and there for lunch dates, play dates (I was still a nanny at the time), and talking excitedly about how great it would be when all of our babies were on the outside. It was a bit of a blow when our respective planes landed and, as it turned out, mine was somewhere else. It wasn't because I was mad or upset that they were in Italy, but because I felt like I had been left behind with my useless maps.
It's been a little over a year since PJ's diagnosis, when we sat in a room at CHOP that turned out to be our terminal and the doctor, acting as our flight captain, told us that we were, indeed, in Holland. For a while, I kept my maps close. I was more then willing to learn about Holland if that's where PJ was, but was still clinging to the idea that Italy was still in our grasp. A year later, when PJ is doing something that doesn't make sense to me, my Italian bubbles to the surface, ineffectual, until I get back on track.
Still, despite all of that, I want to be in Holland. I am learning the language, taking in the landscapes, wearing my clogs and gazing at windmills with an armful of tulips. It's hard sometimes- I spent a lifetime getting ready for Italy and I have only been in Holland for a little while. And yes. Sometimes it stings. It's not because I would want PJ to be any different or because I would love him more if he wasn't Autistic. That's impossible. I love every part of PJ because I love PJ. It doesn't matter where your plane landed- that's the Motherhood Express. The sting comes from wondering what Italy would have been like because a Mama never wants her babies to struggle. Like the essay says, we deal with a very significant loss.
I'm not worried about PJ. PJ has this Holland shit down. That kid wears a pair of clogs like nobody's business. But sometimes, I am still a little bit lost. I get my maps confused and then I feel like an asshole for confusing my maps and then? Well...I get a little bitchy. I don't mean to. But it happens. I become six years old again and fluent in Well, I didn't want to go to stupid Italy anyways! The walls go up. I'd love to ask for help but instead, just stumble blindly along, trying to figure out my maps and getting pissed at anyone I bump in to while my head is down.
I had to admit that I can't do all of PJ's therapies all by myself, and with that revelation, I guess it's time to admit that I can't just be a bitch because I'm lost in Holland sometimes without stopping to ask someone for directions. So, dear friends, just be patient with me. I'll try to be better, and if I look lost, just turn me in the right direction.
You can't miss me. I'm holding the tulips.