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A Pediatric Perspective

An Unexpected Detour

Published January 21, 2008 11:58 AM by Wendy

When you are preparing to have a child you begin to dream of all the things your child will do and all the places they will go.  In your dreams you see your child going through all the stages and growing up to be a wonderful son or daughter.  You envision them graduating, meeting someone, marrying and giving you grandchildren.  You know there will be difficult times.  You know there will be nights where you aren't getting any sleep at all.  You know there will be visits to the doctors.  Yet, in your heart you are prepared for these because you feel they will be just a small part of childhood and that the majority of the time your child will be growing and laughing and playing and learning to talk and to walk and to eat.  You smile as you think about the baseball and basketball games you will be attending, the concerts you will be sitting through and you start looking forward to it.  It's the dream of every parent - a happy and healthy child.

Working in pediatrics you quickly come to see that this dream doesn't always come true.  You meet parents who are struggling with coming to terms that their beloved child may not be able to do everything they have dreamed about for the past nine months.  Working in Birth-to-Three and being in their home during the therapy sessions you come to realize that you aren't just there to help their child but that you are also there to offer guidance for the family.  You become a great listener.  You become a good researcher of support groups and play groups that would help the family as they come to terms with dreaming new dreams and foreseeing a new future for their son or daughter, brother or sister.  Some times it takes a while to come to this realization and you are there when they begin to accept what limitations their child may have and what the future may hold for them.  Other times you say "good-bye" when their child turns 3 years old and transitions to the school with a silent prayer that they'll be able to come to terms and get to the point of dreaming new dreams and loving their son/daughter for who they actually are and not who they had dreamed they would be.

When I was in college my pediatric professor handed out a piece of paper that I always keep in my day planner.  I will often leave it with parents that I feel are ready to read it.  Some of you may know this but those who don't I would like to share with you a lovely piece written by Emily Perl Kingsley concerning an unexpected detour that occurred in her life upon the birth of her child who was born with Down Syndrome. 

 

WELCOME TO HOLLAND
by Emily Perl Kingsley

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 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...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 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.

~ ~ ~ ~ ~ ~ ~~ ~ ~ ~ ~ ~ ~ ~ ~ ~ ~

May we all be able to catch our breath, look around, and appreciate the unexpected detours in our own lives. 
 ~ Wendy ~

posted by Wendy
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2 comments
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Tara,

Thank you for sharing your point of view and it is a very valid one indeed.  It is important to be sure that the family is one that is ready to receive this piece and the type of family that would benefit from it.  There are families that are not interested in inspirational thoughts and would find no value from reading it.  Timing is important.  Family situation is important.  I know that recently when I came upon this again I was able to read it through different "eyes" and it has helped me a great deal due to a change in our family situation.  I have also recently shared it with a family of an autistic child whose mom had shared that she wishes her child could do what the other kids do.  I mentioned it the visit before I brought it and then when I gave it to her we sat talked for a while.  On the next visit she thanked me and said she sat down that night and wrote out a list of things she could do with her child.  It isn't right for everyone, you're correct but there are some families who may not think to look on the internet for inspiration who would appreciate it.  We should all use our professional judgement and knowledge of the family before we share anything.  Thanks again for bringing up some very valid points.
Wendy February 6, 2008 6:09 PM

This is a lovely article for parents and families with exceptional children.  However, caution should be used when presenting these articles to families with children with special needs.  Far too often professionals interfere with the healing process a parent or family goes through by prematurely offering these pearls of wisdom just because we think they are perfect for that family's situation and because we can.  Even the most well meaning intentions can cause an already stressed family more grief and sadness.  With the the numerous technology options available to people today, if they are looking for inspirational articles for their situation they can find it themselves or they might simply ask you for one.  This is an important perspective that many therapists may not take into account simply because they don't realize it and can not imagine themselves what it feels like to be the parent of an exceptional child.

Tara Olson February 4, 2008 1:40 PM

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