Holland Isn’t So Bad After All

March 12, 2009 at 8:33 pm 2 comments

Tonight I attended my first support group meeting for parents of children with disabilities.

Tonight, I found out what it means to land in Holland.

About 22 years ago, a mother and writer named Emily Perl Kinglsey wrote a little blurb about what it felt like to raise a child with special needs.  She titled it, Welcome to Holland:

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.

For us, I feel as though we have a vacation villa in Italy, a place we visit once in a while, but that Holland is our home, our comfort, our base.  Tonight, I attended a local support group and I met a Mom with three children, twin boys and another son, all with a host of disabilities.  She talked about how small her world got as her children’s issues progressed.  Friends stopped calling.  She retreated and withdrew.  She and her husband began drifting apart.  She mourned the loss of the dream she once had of “normal” kids.  I realized that even though our kids’ needs were as close as chalk and cheese, our struggles were strikingly similar.

We both had detailed itineraries for Italy, and we both firmly landed in Holland.

We have this romantic notion of what you expect from being a parent, of what your kids will accomplish and your expectations that you and society set for your children.  When you’re faced with anything which comes between you and your vision of “normal” children, it’s as if something dies.  My therapist told me recently that I’m in the mourning period often experienced by those who lose a loved one and parents of children with special needs.  That it is necessary to feel the pain and anger of the loss before it’s possible to move on to acceptance and, in our case, effective advocacy.  When I tell people that, they look at me with a scrunched up, confused face.

Now, all I have to say is I was diverted.  Originally, we’d packed and planned for a trip to Italy, but we ended up in Holland instead.  And, now that we’ve been here a while, sure, there’s a bit of a language barrier and some navigation issues, but overall?  Holland isn’t so bad.  And, I think we’ll be sticking around as long as the good people will have us.

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Entry filed under: Autism/Aspergers or Something Like It, Momma Drama.

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2 Comments Add your own

  • 1. divrchk  |  March 13, 2009 at 10:43 am

    What a great post. Thanks for sharing.

    Reply
  • 2. MJ  |  March 16, 2009 at 11:43 am

    I LOVE that story.

    I have no doubt that what a parent of a child with a disabiltiy has to deal with on a daily basis can be so tiring, but you are awesome. Way to step up to the plate.

    As someone who’s worked with people with disabilities for so long, I have to say that you are amazing, and a great mom, and I pray that you can keep up the good fight and get those adorable babies of yours all the help they need.

    Reply

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