Learning To Live In A New Place

Several years ago Emily Pearl Kingsley wrote to the "Dear Abby" newspaper column to try and explain the experience of being the parent of a special needs child. This is what she wrote:

"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 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 most 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 guidebooks. 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 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 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."

The members of Pull-thru Network are the tour guides to the new place where you have suddenly found yourself. They can help you make the transition from where you expected to be to where you are. Some of the guides have been here for years and know all of the ins and outs of where to go, what to do, and how to do it. Some, like you, are relatively new to the area, and we believe that there is comfort when parents find that they are not the only ones who feel lost and afraid.

Pull-thru Network has many tools to use to help guide our member families on their way. Our first contact is usually through the Internet and the PTN website. PTN receives e-mails every day from families whose babies are just a few days old, and from the families of older children who are experiencing problems. Each family wants information and the reassurance that comes from knowing that they are not going to have to do it all alone.

"Alone?" you say. "How can these families feel that they are alone when they have excellent doctors and wonderful nurses taking care of their child?" Pull-thru Network does not underestimate the value that qualified medical professionals bring to you and your child. But, no amount of education or medical experience will take the place of "I've been there - and - I've done that", in other words, personal hands-on parent experience.

The members of Pull-thru Network share their personal experiences in the pages of The Pull-thru Network News (the PTN newsletter published 4 times a year), the forum and the chat room portions of this website. What you and the other PTN parents are asked to do can be difficult and it is very comforting to read that others also struggle. It is also very encouraging to read about the children who are doing well. It helps all of us to believe that our child is going to do well, too. It means so much for the family of a baby to read about the older children who are active in sports, music and school activities. The school age children are encouraged when they read about the teenagers who are on their school's sports teams, who are active in their communities, or are winning academic honors. While it is critical that Pull-thru Network support our members through the medical challenges, we must also focus on all the ways in which our children are just like their typical peers and siblings.

The forum and chat room allow us the luxury of almost instant contact and feedback from other parents. We vent our frustrations and celebrate good news every day. We share ideas, seek answers to questions, and learn from each other. Every one of these participants is a family who needs support, and also a family who is willing to give support to others.

Pull-thru Network must also provide families with road maps to help them find their way. These road maps are in the form of the educational information and publications that are made available to our members. In addition to The PTN News, PTN has available a variety of pediatric brochures, books, and care guides in addition to the wealth of information on this website. PTN also asks our Medical Advisors and other members of the medical community to write articles on current medical practices, new techniques and to answer questions that have been submitted by PTN members.

No one can truly feel at home in a new place until good friends surround him or her. Our best friends are those we have much in common with. As we all know, anorectal or urogenital malformations and disease are rare disorders, and so it is understandable that at times we all feel isolated. One of the most important functions of Pull-thru Network is to facilitate families getting to know each other. It is important that our parent members have friends that they can talk to about the stresses of surgery, diaper rash remedies, pouching methods and the trials and errors of bowel management. We need friends who don't flinch when we use the words that are necessary when we discuss our child's diagnosis and medical challenges. The members of Pull-thru Network have discovered that raising our special children is easier when we are surrounds by our PTN friends.

As important as it is for parents to have friends to share with, it is even more important that these special children know that they are others like themselves. Every one of these children, at one time or another, has asked, or is going to ask, "Why me?" While we have to admit that there isn't an answer to that question, we can let them know that they are not the only child who was born with these challenges. All children need to feel that they belong.

Pull-thru Network supports both regional and national educational seminars, family picnics and get-togethers to help meet both the educational and social needs of PTN members. Information on the events that are currently scheduled can be found on the PTN website.

You and I, along with the other members of Pull-thru Network, may not have been able to travel to the place we envisioned during our pregnancies, but thanks to our child's doctors, and with the guidance of the caring tour guides in PTN, there is no limit to where our children can go. The members of Pull-thru Network welcome you to our network of education, information, support and advocacy and are glad to be your guides as you learn to live in this new place.

Bonnie McElroy
Executive Director
Pull-thru Network, Inc.