I’m not entirely sure what I want to write about…but I know I want to write something.  I can’t believe another year has come and gone. This year has been incredibly challenging and incredibly rewarding.  From our move to  North Carolina to Peter’s diagnosis of Autism…to a major “career” change…I’ve learned some valuable lessons.  I suppose I’ll share them, obvious as they are to most of the population…

• Nothing in life is for certain, it can change in a moment.  Flexibility is an important attribute.
• No matter how bad it seems; it’s always worse for someone else. 
• You can’t change anyone.  You are only responsible for yourself.
• You can tell those who know you that you are “okay” as many times as you want, but they can tell when you aren’t.
• True friendships survive anything – time, distance, and circumstance.
• No matter how much you want to shut the world out, it’s always better when you let it in.
• You can learn a hell of a lot from a two year old.
• You can be a housewife and still be smart.
• If you can express yourself well in writing, you can go far in life.
• One person can change the world.  
• If you never ask for help, you’ll never get it.
• It’s okay to dance in the rain, or to color your hair pink…if if makes YOU happy.
  
• It is impossible to make everyone happy…and sometimes it’s impossible to make anyone happy.

I don’t claim to have had any great epiphany.  I certainly have a long way to go before I actually implement the knowledge of the above truths in my own life.  It’s one think to know things intellectually and another to know them intrinsically.  I suppose, however, that is the purpose of this whole journey.  We never stop learning and never stop growing.  I know more at 30 than I did at 20. Actually, I know a lot more at 30 than I did at 29. 

I’m one of those people that still makes New Year’s resolutions.  I’m actually quite good at keeping them.  If you “know” me, then it will make sense that fresh starts are kind of my sanity.  I’ve been thinking long and hard about what I want to accomplish in 2009.  I’m not interested in superficial goals this go around.  I’m interested in continuing my spiritual journey. 

My resolution for 2009 is to be nicer to myself.  To stop trying to conform to some idealogical definition of “perfection” that doesn’t exist.  To stop worrying about what everyone else thinks so much and to concentrate on what “I” think.  To let go of the past, to celebrate the present, and to let the future evolve on it’s own.  I’m also, permanently removing the words “I’m sorry” from my vocabulary.  I’ll only pull them out when they are absolutely warrented – and therefore actually meaningful.

Perhaps, the most amazing thing about 2008, was really finding myself as a mother.  It’s so incredibly empowering being Peter’s mommy.  I have found strength and confidence that I never knew existed.  I experience joy beyond my deepest imagination – daily. Glimpsing life through the eyes of a very special two year old has been the most remarkable gift I’ve ever received. 

I have no idea what 2009 will bring.  I suppose there will be trials and triumphs.  But I’m also certain that it will bring many opportunities to learn and grow.

If you have a child with special needs, you have undoubtedly read “Welcome to Holland” by Emily Perl Kingsley (included below – you might want to scan down and read it first if you aren’t familiar with it). It’s a lovely piece which takes us by both hands and implores us to count our many blessings, celebrate our diversity and ultimately accept that unpredictability is the spice of life.

It’s beautiful and altruistic.  I admit that I still get teary-eyed and sentimental when I read it. It’s also a great INTRODUCTION to life with a special needs child. But, I’m sure even Ms. Kingsley would have to admit that there are a few key concessions missing. 

For starters, where do I find these “guidebooks” that she speaks of? Let’s be realistic…especially with a spectrum disorder such as Autism, there’s no book (even in Dutch) that can assist you in traversing this journey. Each child could have their own “guide”, and it would be outdated daily, sometimes hourly.

And why must we stay in Holland anyway? Can’t we have a summer home on Lake Como? Really? Does life stop because you have a special needs child? Does Peter’s Autism mean that I’ll never facilitate an editorial board meeting again? I can’t finish my education? I don’t think it has to be that way. Certainly right now it can’t be any other way. That’s okay, in fact, that’s optimal. I am learning more being my sons advocate than I could in 20 years of PR work. But I hope to take what I’ve learned here in Holland and share it in Italy. After all, they aren’t worlds apart.

Finally, I’m not so sure that my life in Holland is slower-paced than my life in Italy. Sixty-hours a week working for 10,000 children was far less taxing than 168 hours a week working for one. I have the amazing privilege of a full time support system. A wonderful husband, a mother and father-in-law who can be credited with a majority of the success Peter has had, and six days a week of therapy with the most talented and devoted team on the planet. Peter’s “posse” is formidable. Yet still, I hardly have a moment to catch my breath each day. Add on interviews with preschools, doctors appointments and two hour long phone calls with my good friends at Medicaid, bathtime, meals, playtime, etc.  Even with the world class team I’ve been afforded, I often long for 12 hour days of meetings, emails and conference calls. Italy might be more glamorous, but I can assure you that Holland is hoppin’ too.

Yet there’s one passage that always resonates with me.

“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.’” (Kingsley, 1987)

I can’t argue there. When you are the lone person who doesn’t speak Italian, in a world where most “took a semester of Dutch in high school”, it’s hard to find common ground. What’s worse is that you know just enough Italian to feel forever on the fringe…like you could order breakfast but that’s about it. And after you’ve had a taste of Italy, you so desperately want to shout from the cupolas that you’ve seen the Sistine Chapel, you LOVE lemon gelato, the Roman catacombs are fascinating…but it’s not enough. You’re just a tourist. Your life is windmills, and tulips and Rembrandts, which are all amazing in their own right… It’s just that since everyone is so enthralled with Italy there is no need for them to take a trip to Holland; to appreciate its unique beauty.

You love Holland. You couldn’t imagine anything better, even after glimpsing the glamour and je ne sais quoi of Italy. But Italy is not home.  It’s a place you can visit; a place you can even yearn for once in a while.  But ultimately, it’s your job to ensure that Holland isn’t forgotten amongst the effervescent limelight of Italy. 

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c1987 by Emily Perl Kingsley. All rights reserved

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 guide books 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.