I'm okay with Holland

Raising a special needs child (even one as "easy" as Lucas) is challenging. It means a lot of acceptance, a lot of changing one's expectations of parenting, a lot of not caring what other's think and tossing out a lot of advice. You also get real good and (fake) smiling and nodding and real good at rolling your eyes behind peoples' backs. But you learn to enjoy the ride and hang on tight. You learn to roll with the punches and find joy in things nobody else might. I'm often reminded of this little essay by Emily Perl Kingsley which so succinctly describes what it's like to be parenting a special needs child (no matter what those needs are).

WELCOME TO HOLLAND

by
Emily Perl Kingsley

c1987 by Emily Perl Kingsley. All rights reservedI 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.

Down Memory Lane

I took the long way to the oncologist this morning. Meandered down Jericho Turnpike to 347. Which meant I passed the following:

-The general practitioner's office where I went countless times during the summer of 2004 complaining of a cough that wouldn't go away, which then gave way to fevers, night sweats....
- The pulmonologist's office where I was told, "That isn't pneumonia" after another chest x-ray, and "you need a CT scan tomorrow". Where I was also told, "Well, whatever it is is treatable and curable" which made me much less fearful of what was waiting for me down the pike. What he saw on the CT scan was so bad that he didn't even charge us a co-pay for that visit.
- The thoracic surgeon's office, where we talked about possible surgery and later talked about a port install. It took me forever to remember how to pronounce Dr. Mohedrin's name.
- The now-vacant site for J&R's Steakhouse where I had my first real meal that tasted divine after months of not tasting food and not being hungry. What sticks in my mind most about that is a beautiful country breakfast (eggs, super thick bacon, biscuits, and potatoes) placed in front of me and just not even seeing food. Ironically these days I'm a (mostly) vegetarian. Mostly.

Then once in the building, I walk by the entrance to the "infusion center" where I spent nearly two (non consecutive) weeks having chemo drugs pumped into my system. I remember so much about those days - tucked under a blanket, PICC-lined arm hanging out to be monitored. I remember that no matter what, I insisted on wearing at least an "ensemble" of comfy clothes and always the brown sweater - big enough for my swollen and tube-plagued left arm- which to this day is comforting and cozy. I remember lots of chicken cutlets and barbecue potato chips (which I now can't even look at). I remember that they called the giant red syringe of adriamycin the "hair killer" and when giving me the (relatively) small syringe of vincristine saying, "here's the one from the beautiful flower!" (Which may be a contender for a future tattoo...just sayin'.)

I walk by the exam room where I withstood a bone marrow biopsy. (Dr. Berger says, "Okay, we're going to do a bone marrow biopsy to make sure it hasn't spread there." Me: "Don't we need to be in a hospital for something like that?" He just smiled.) I walk by the room where at my very last visit with Dr. Berger he met Lucas - just 3 months old and snug in a little carrier.

The exams these days are more of a visit with an old friend than a reassurance that the cancer isn't back. Julie and I share pictures of the kids (born 10 days apart!), talk about theatre and what shows are playing to take the kids to. Oh, and by the way, you're still healthy. I feel more like a visitor than a resident to Belle Meade Road. And that's fine with me.