Friday, September 19, 2014

Welcome To Holland

 I'm sitting in a hospital room at NYU Medical Center with Jacob on my lap. I'm reading him some stories and entertaining him. He's 18 months old.

Jacob is in for chemotherapy. As far as hospital stays go, this one is pretty routine. I know I sound crazy. How can any hospital stay with an 18 month old possibly be routine? Before any of this happened I would have said the same thing.

Life has settled into a pattern - a pattern that is distinctly childhood cancer style, but a pattern nonetheless. It's not like watching ER or Gray's Anatomy where dramatic things are happening all of the time. In our case we have these days that are fairly predictable and even banal in their own way, punctuated by unexpected crises. There are also planned challenges like MRI scans, surgeries and oncology meetings. These are all scary.

Compared to a sudden spike of fever, a zero white blood cell count, or a fall from the crib - yes, this happened in the hospital - this chemotherapy admission feels okay. This is regular chemo, not stem cell transplant chemo.

I do Jacob's naptime routine with him and put him down in his crib. Predictability is very important when raising toddlers. I'm replicating as many of Jacob's household routines as I can in the hospital. I step outside of the door for a few minutes to let him settle himself. Then after he's asleep I come back in and fold myself into the armchair in his room.

I'll never be a regular mom. I say to myself. This thought comes to me unbidden, and clear as day.

It isn't coming from a sad, feeling sorry for myself place.  Things are going well, under the circumstances. Jacob has had only clean scans since the surgery. His prognostic indicators - terminology his neurosurgeon and oncology team like using - are excellent. Jacob is expected to survive.

Jacob is easy-going, sweet and sociable. He keeps me very much in the moment. He enjoys himself in almost any circumstances. He lifts me up.

There's more happy news for our family. I'm in the early stages of pregnancy. There's going to be a brother or sister for Jacob.

I'll never be a regular mom has no pity attached to it. It is simply an observation. Even if all goes well with Jacob and the new baby - and I'm feeling optimistic - I am forever changed by my experience. It isn't good, it isn't bad, it just is. I take it on with the same steadiness that I've accepted many things as of late.

Fast-forward several years. Jacob has since died, a reality I'm not getting over so much as imperfectly learning to live with. Jacob's little sister has been joined by a brother, born after Jacob died. Both children are healthy and both children are in school.

My thought in the hospital room turned out to be strikingly prophetic. I'm not a regular mom. I notice this in various ways. When I see families - intact families - with three children, I get a little wistful. Otherwise, I have the same equanimity about it.

I'm grateful to have regular mom friends. In spite of my sad story, other moms with healthy kids have befriended me. These women - the close friends, the acquaintances, the acquaintances that later turned into close friends - help me feel that I am more than a walking worst-case scenario. I am more than a cancer mom.

In my travels I've picked up a free magazine called Special Parent. One of my children seems so very gifted. His ability to learn and think deeply is already apparent. At the same time, there are qualities to this child that seem different from all other children. Things that other children learn more slowly, he learns quickly. Things that other children learn more quickly, he learns more slowly.

This child is connected and loving, kinetic, sweet and endlessly curious. There is an enigma like quality to him. He is an exciting child. With him, I learn to dig deep. I learn a patience I never knew I had.

The magazine feels safer than the Internet. The magazine is a place I can dip my toe in. The magazine is where I first see this:

Emily Perl Kingsley.
©1987 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 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.

I ignore everything else in the special needs magazine except for this. But I read Welcome to Holland three or four times. I rip it out of the magazine and display it on the magnetized bulletin board above my desk.

I'll never be a regular mom is what I said. Welcome to Holland is what another mom said. She used a lot of words. I used a few. But really, we are both saying the same thing. Welcome to Holland means someone gets it.

There are times I privately call Welcome to Holland moments. I remember my journey with Jacob. The moms I met in support groups. The oncology nurse I still feel close to.

Jacob has landed me in Holland. Other circumstances will keep me there.

In spite of the analogy, Holland is no vacation. One afternoon, my child is having a hard time on the subway. An older woman lectures me then calls him a retard.

Then there are moments I wouldn't trade for the world. When you're living in Holland a single conversation can turn everything around. Sometimes that conversation happens at the IEP meeting. Other times it's the checkout line of the grocery store.

 I've learned that having a child with cancer is not always enough commonality between myself and someone else. Neither is having a child with special needs. It's like anything else. Sometimes you connect. Sometime you don't.

And so it is with Holland. Not everyone likes Welcome to Holland. My liking it might have something to do with the way it entered my life. I happened on it accidentally. That made it my discovery, on my terms.

Some other moms were handed a copy of Welcome to Holland by someone with good intentions. The person with good intentions and four healthy children has no business handing out articles about Holland to a Cancer Mom. She hasn't been to Holland. Or she hasn't been to our part of Holland.

Everyone's Holland is different.

I'm on my way home from dropping my son off at his new school. It's raining. I maneuver my way along the crowded sidewalk wielding an umbrella. I see a teenager, slightly older than my son, running awkwardly with plastic bags affixed to both feet.  I take in this funny scene with affection.

This kid came up with a novel solution to the problem of pricey, brand new sneakers and rain. I imagine him arriving at school, hurriedly removing the bags, then coolly walking to class. He looks nonchalant, but feels like a celebrity.

This kid does not have cancer. He's the very picture of classic male adolescence. He's not even my kid. Welcome to Holland, I say anyway. 

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