Welcome to Holland - Parenting a Child with a disability
On the 20th of May I had the pleasure of making contact with Ella Burakowski Cohen, a fellow author who is doing some wonderful things in the realm of reading for Young Adults in the Great White North, (Canada for those of you who may not be familiar with this term). I will be posting a wonderful article based on a recent interview I held with Ella in the coming days. Please look out for that, you won’t be disappointed!
So why mention it now, you are probably asking yourself?
Simple.
Through our email correspondences I came to appreciate Ella as we have much in common, again something you will also be privy to in her upcoming interview, however there was a part in our conversation that had really resonated with me. Many of you who have been following my blog or who know me personally, are well aware of the medical issues my wife and I face with respect to our son, Eric who was born with a very rare genetic disorder called Mowat-Wilson Syndrome. Ella had sent me a PDF document containing a piece of literature, I have to admit, I was blissfully unaware had the article even existed. Titled ‘Welcome to Holland’ it was a piece written by Emily Perl Kinsley c.1987, an American writer who, according to Wikipedia, had “joined the Sesame Street team in 1970 and has been writing for the show ever since.’’ She had a son who was born with Down syndrome, and had written the piece to compare the experience of having a child born with a disability to ‘’having a trip to Italy rerouted to Holland.’’
As I read the article I found that it resonated deeply with me, bringing on an onslaught of emotions hit me as flashbacks of the turbulent times my wife and I had to watch Eric endure, since his early and difficult birth with so much pain and tribulations, flashed through my mind. He had to go through a great deal in order to reach where he is today both physically and medically. However, with all the emotions the article brought to the forefront, there was also a calming effect when I read how the detailed comparisons and advice provided in the article helped to bring some order to the chaotic feelings of anger and hurt I regularly experience but try to hide deep down within particularly when having to watch him endure so much to reach milestones many other children reach easily.
I wanted to learn more about this writer and as such, I did a little research and found out, via a Facebook page focusing on the objective of stopping discrimination against special needs, (link provided below), Emily Perl Kingsley wrote a second part to the story from the perspective of having been in Holland for over a decade, again another point that resonated with me on account that Eric recently turned 10 years of age.
Whilst researching more about this author I felt compelled to share the story she wrote further down below in this article. For some who read this, who perhaps are living a similar reality to what my wife and I are experiencing, the story will resonate positively with them, others, as has been seen on other websites, may beg to differ or have their own opinions about the matter and that’s fine too. It’s the beauty of a good piece of writing that, once written and published, can have this effect on people and get them to think, to question, to relate…to feel….and that’s one of the many wonderful reasons why reading is so important and why good pieces of writing should be shared for the benefit of all.
WELCOME TO HOLLAND
By Emily Perl Kingsley c1987. 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.
"Welcome to Holland' by Emily Perl Kingsley
Performed by : Ron Silcock
Produced by: rubberduckie.tv
"Welcome to Holland (Part 2)"
by Emily Perl Kingsley
I have been in Holland for over a decade now. It has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I'd planned.
I reflect back on those years of past when I had first landed in Holland. I remember clearly my shock, my fear, my anger—the pain and uncertainty. In those first few years, I tried to get back to Italy as planned, but Holland was where I was to stay. Today, I can say how far I have come on this unexpected journey. I have learned so much more. But, this too has been a journey of time. I worked hard. I bought new guidebooks. I learned a new language and I slowly found my way around this new land. I have met others whose plans had changed like mine, and who could share my experience. We supported one another and some have become very special friends. Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me. Many have taught me to open my eyes to the wonder and gifts to behold in this new land. I have discovered a community of caring. Holland wasn't so bad. I think that Holland is used to wayward travelers like me and grew to become a land of hospitality, reaching out to welcome, to assist and to support newcomers like me in this new land. Over the years, I've wondered what life would have been like if I'd landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today? Sure, this journey has been more challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift. I have learned to slow down in ways too and look closer at things, with a new appreciation for the remarkable beauty of Holland with its' tulips, windmills and Rembrandts. I have come to love Holland and call it Home. I have become a world traveler and discovered that it doesn't matter where you land. What's more important is what you make of your journey and how you see and enjoy the very special, the very lovely, things that Holland, or any land, has to offer. Yes, over a decade ago I landed in a place I hadn't planned. Yet I am thankful, for this destination has been richer than I could have imagined!
I hope you enjoyed reading this article. I would love to read your thoughts, feelings or opinions about this story. Do you have a child with special needs? Are you a relative of a child with special needs? Please add a comment at the bottom of this article. Would love to hear from you.
Links which may be of interest to you and referred to in the creation of this article:
