Wednesday, October 17, 2012

Welcome To Holland... Now What?

Apparently, I’ve been exiled. Sentenced to Life in Holland, or at least that’s what I’ve been told. Metaphorically of course.   

Part of the indoctrination into parenting a child with special needs includes a therapist, social worker, health professional, sweet friend or neighbor ceremonially handing you the classic essay Welcome To Holland.  Written in 1987 by Emily Perl Kingsley, mother of a son with Downs Syndrome, Welcome To Holland is one woman’s literary attempt at describing her experience parenting a child with special needs.  It caught fire in the disability community and continues to stand decades later as one of the iconic metaphors of true acceptance. Kingsley quite beautifully conjures a poetic analogy, likening the experience of parenting a special child to packing your bags for a well-planned trip to Italy, but ending up rerouted to Holland instead.  If you are not familiar, or vaguely so, with Kingsley's Welcome To Holland, I will give you the Reader’s Digest version.  

It’s a plucky little ditty that goes something like this:  

When you are pregnant it’s like you are planning your dream trip to Italy.  This is your ideal destination, where all your friends are, where you have spent months preparing to wind up.  You’ve studied the travel brochures, learned the language, packed the proper attire, booked your hotels, planned your itinerary, plotted your map.  But, surprise!  After hours flying coach without a window seat, you quite randomly land in Holland instead.  You are dazed and shocked when your plane disembarks at WTF Airport because you were expecting to see the canals of Venice, the sunflowers of Tuscany, and gorge on pasta and gelato.  Instead, you are four meters below sea level choking down herring with a side of french fries and mayonnaise while trying to ride a bicycle in flooded streets with wooden shoes and a very unflattering pointy hat.  Or something to that effect. You get the gist.   

But fear not! Kingsley assures the reader that while one’s dreams of Italy have literally been hijacked, they are soon replaced by a deep appreciation of all that Holland offers – exceptional cheeses, phenomenal museums, and legalized recreational mind-altering substances (the latter of which would theoretically come in handy as you live out your life sentence). The moral of her parenting story is that while you are initially unprepared, disappointed, confused, disheartened and even stressed out at ending up in the wrong country that eventually (in what sounds like moments rather than years) you stop sobbing over Italy and fall in love with Holland.  The end.  

     It’s all quite lovely except for one tiny detail she neglects to mention:
No offense, but Holland kind of blows. 

While I feel like a colossal jerk taking a scalpel Kingsley’s sweet essay, I do find some relief in the fact that I am not alone in my inability to fully relate to her sentiment.  In fact, several mothers have expressed the opinion that Kingsley’s analogy only paints half the picture of a Dutch windmill. A few of the most popular essays clarifying Welcome To Holland with a bit more wit and reality include Susan Rzucidlo’s Welcome To Beirut and Lara Crawford’s Holland Schmolland.  I too have toyed with my own essays on the subject: 

 Dear Holland, Bite Me  
 Welcome To Hell-Land
Holland Is For Wimps
I Went To Holland And All I Got Was This Lousy T-Shirt…and Bitch Slapped.
I only got as far as brainstorming titles.  Let’s face it, that’s the fun party anyway.  

I do not disagree with Kingsley’s overall message:  To love our children not “in spite of” but “because of,” with a heart as open as the Universe is endless and with a positive attitude.  My only beef, minor as it is, with Kingsley’s essay is that it is a bit too one dimensional, glossing over the many issues parents of significantly disabled children face.  Leaning toward the Pollyanna, Kingsley neglects to address the broad array of fears, the depth of loss, and the barrage of challenges that parents lost in the vortex of a complicated, scary, and often overwhelming situation face.  There is a large spectrum of “special needs” and depending on the type, extent, severity, and variety of needs for any given child, parenting stress can be more or less extreme, physically demanding, frightening, and all-consuming.  Especially if there are serious physical and/or medical complications. Especially when a child is "low functioning" rather than "high functioning." Especially when there are cognitive impairments that range from severe to profound.  Especially when there are life-threatening health issues involved.  

Kingsley's first flaw is that she introduces the metaphor as a fabulous vacation to Holland, which conjures images of a relaxing, recreational, time-limited hiatus, rather than a permanent relocation against your will where you will need to work relentlessly both day and night for the rest of your life.  This is no quiet little sojourn, real or imagined, nor is life in general, so I can’t begrudge her all too much.  Raising a child, typical or non-typical, is certainly no vacation unless I like to spend my vacations doing things like Alaskan Ice Fishing. Naked. Which I don’t, in case you’re curious.  

Secondly, since we’ve already established that you are not visiting Holland to sight see, obviously you will need to endure the difficult and lengthy process of assimilation into a foreign culture.  You are an unsuspecting tourist turned reluctant local and it is not that easy to fit right in with the pace, climate, and idiosyncrasies of this new land.  Even after almost 18 years of motherhood with a special needs child, I am still not a permanent resident of Holland.  There are times when the country feels relaxed and proverbial, but I’m definitely only on a temporary visa, still tongue tied by my second language, still getting lost in the unfamiliar topography, and often so homesick for the world that I left behind it hurts like a physical pain. 

Lastly, but most important, I don’t know which Holland Ms. Kingsley is living in, but my Holland  has a whole lot of poo in it.  And this I don’t mean this figuratively.  Poo.  Everywhere.  Constantly.  And apparently I am in charge of Holland’s sanitation department because I’m always cleaning it up.  I can’t fully relate to any words of wisdom that fail to acknowledge the overwhelming amount of poo.  All credibility is lost without it.  

     While one simple essay may provide some comfort and inspiration by helping each of us focus on the pinnacle of acceptance and joy in 500 words or less, the reality is that accepting you are in Holland is only half the battle. Living in Holland is the other half.   Finding a true appreciation for  Holland doesn’t happen over night or at the end of reading a pithy essay.  I have been in Holland for a long time now, but often find myself quite lost.  The longer I stay, the more I appreciate it, but it is certainly a country with tremendous, chronic stress... much like the real Holland.

     Interestingly enough, Holland is part of The Netherlands - a country roughly the size of Maryland with a population of approximately 15 million people.  What makes the Netherlands most unique is that one quarter of the country is below sea level, sentencing it to a lifetime of holding back the floods in order to keep its citizens safe and its country habitable. The Netherland boasts 1,860 miles of outer-sea dykes and 6,200 miles of river dykes and canal walls. If the nationwide pumping stations failed?  The country would be covered by 3 feet of water within a single week.   Without working tirelessly against the hardships mother nature has conjured, Holland and most of the Netherlands would be as lost as the city of Atlantis.  

     So maybe Kingsley unwittingly nailed it after all.  Holland has so many things to appreciate, but it has to work tirelessly against that wall of water threatening to drown it.  In this push-pull, ying-yang, love-hate relationship with that which would swallow it whole, Holland has somehow managed to (no pun intended) stay afloat.  Holland is a story of beauty, culture, and success in the face of constant, unrelenting stress.  It has not succumbed to ruin.  It has found a way to thrive...   just like those who find themselves reluctant "tourists turned locals," losing and finding themselves again and again in a land called Holland. A land that overwhelms them with beauty, love, and challenge.  A land they someday, somehow, will learn to call home.   


kario said...

Not to mention that in the actual Holland, there is, arguably, the world's best (universal) healthcare and tremendous acceptance and resources for families and caregivers. Might make it feel a bit more restful...


Alicia (Dr. Mom) said...

ahhhh... good point kari!

Elizabeth said...

What a terrific essay -- I agree with you wholeheartedly and share many of the same experiences in this new country. You are much kinder, though, about the original essay which, after about year five of my stay in Holland, became something to mock and feel nothing but contempt for --

Anonymous said...

Thank you.
So often I don't want to verbalize the hard side of this life.
I too have a physical ache sometimes when I think of this life sentence. I'll never send my son off to school, married life, work and think...Ok, it's up to him now.
I will, untill the day I die be worried, involved, orchestrating to a large degree my sons life.
Some days it's too much to bare.
I love him beyond measure, but a vacation in Italy (alone) sounds lovely.

Alicia (Dr. Mom) said...

lol elizabeth! - My original rendition was far less kind but i don't want to bash her too much - i guess it was an important piece to write at the TIME (1980s) when people thought it was a virtual death sentence and these kids were considered a tragedy. Now, I think we've progressed beyond the syrupy pollyanna and we need some real life 'grit' in order to relate. I wouldn't DARE give someone that poem nowadays... i'd give them YOUR blog instead :)

jeneva said...

I posted this to my Facebook page. Loved it. My cousin, who was a 3 year old with special needs found it really helpful.

Patricia said...

I'm from Holland and have a kid with a disabilitie. how do you think I feel ;-)

Related Posts with Thumbnails