What “Welcome to Holland” Gets Wrong

Written in 1987 by Emily Perl Kingsley, the short essay “Welcome to Holland” is often given to parents of children with disabilities. It’s meant to comfort parents and reassure them that raising a disabled child is worth it. Here’s the full text:

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 important thing is 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 never would 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 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 go 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

I can’t say that I’m in love with this essay.

Don’t get me wrong: I think “Welcome to Holland” is a good analogy. I think it’s worth a read. I think that almost everything written in it is accurate and well-thought-out.

But there’s one line that I don’t believe in:

And the pain of [not having a non-disabled child] will never, ever, ever, ever go away…because the loss of that dream is a very, very significant loss.

Welcome to Holland by Emily Perl Kingsley

This may have reflected Kingsley’s feelings at the time. But just because she once felt that way doesn’t mean it’s 100% true for everybody.

If you’re a parent dealing with a new diagnosis, you may be dealing with a whirlwind of emotions. You may be scared, sad, confused, or something else. I don’t blame you for having those feelings. You’re adjusting to something new, and it’s something you may not understand well yet.

So rather than saying “Kingsley is wrong because logic,” I’d like to share the perspectives of a few parents who did come to accept disability. Let’s hear the voices of Leo and Diana Rose, my mom and dad. They’re parents to not one, but two daughters with disabilities.

Interview setup

I interviewed Mom and Dad separately, asking them the same 6 questions on different days. I am displaying their answers together because I think it’s nicer to read that way.

Since anything they say about me might be impacted by the fact that they were talking to me, and since my disability isn’t as obvious, I focused the questions on the topic of my sister Stella.

They made minor edits to their words upon re-reading, and I also edited out real names for privacy’s sake.

Questions

1. When Stella was first diagnosed with Down syndrome, what did you think and feel?

Mom: Surprised. Challenged. And closer to [my husband]. And maybe a little bit of overwhelmed. And… sad, realizing I needed to build new dreams, but I didn’t know what those new ones were going to look like.

Dad: I really don’t remember. I mean, it was right at birth, so it wasn’t like it took a while to figure out. Mostly I think there were some health issues when she was first born, when they needed to stabilize a lot of things, but since she was born early, I didn’t necessarily attribute it to Down syndrome.

I don’t really remember exactly what I was thinking or feeling about Down syndrome. Mostly I was just concerned about her health. But in the sense, you know, she was born early, you know, she came like 3 weeks, 4 weeks early. That was my biggest concern right then that she was premature. I knew that premature babies had potentially a number of issues.

2. How do you feel about Down syndrome now?

Mom: Hmm… [thinks for a long time and laughs] I just don’t think about her that way. I just think about her as Stella. But I see how beautiful it is, and I didn’t see that at first.

Dad: [long pause] I don’t know. I guess neutral. I don’t see it as good, I don’t see it as bad, I just see it as the way somebody is. And… beyond that, I don’t—it just kind of feels like I don’t see it as this category so much as I see the person. And yes, she has Down syndrome, but… It’s a little bit hard to express anything here because I don’t necessarily see it as all that critical to understanding the person.

3. Stella isn’t going to drive or attend college.* She’ll have Down syndrome for life. What do you think about that?

Mom: She’s one of the lucky ones, ‘cause she has a very caring family around her. [looks at me] So, she’ll be good. Yeah, I really don’t think driving and college are that important. Sometimes she’s going to have to depend on the kindness of strangers, and I’m okay with that because I think most people are good.

Dad: I… don’t really think about that much at all. I just say there’s lots of ways to live, and Stella’s way of living is a very valid one, so I’m not going to try to fit her into any presuppositions about what kind of life she’s supposed to have.

*While some people with Down syndrome can do these things, Stella has a significant intellectual disability so it’s not a realistic goal. And, most importantly, these aren’t things she really wants or needs.

4. I, too, will be disabled for life. What are your feelings about that?

Mom: That you’re going to navigate it well. Beautifully. And I’ll always be proud of you.

Dad: I would say it’s a very similar thing. I mean, there’s just a million different ways that people live lives and to force somebody into the notion that they have to have a certain kind of life is wrong to me.

5. When you imagine Stella’s and my future, how do you feel?

Mom: Hopeful. And… trusting that you’re going to be happy.

Dad: I just hope that you guys will be happy, whatever road you take.

6. Let me read the line from “Welcome to Holland.”

And the pain of [not having a non-disabled child] will never, ever, ever, ever go away…because the loss of that dream is a very, very significant loss.

*Do you agree with Kingsley’s assessment,** and what do you want parents of newly-diagnosed kids to know?

Mom: [laughs, shakes head] Oh, that’s too bad that someone would feel that way! It seems so improbable. Parents love their kids so much. And… part of being a parent is embracing whoever they are. [laughs] In all of their color! It’s not about you, it’s about them.

[I want them to know] that it’s a special journey. Um, but it’s just as beautiful as the alternative.

Dad: I disagree with that line strongly.

Relax. [laughs] I don’t know. You can find joy in anything if you have the right mindset.

* This is the point at which Dad started laughing and shaking his head.

** This is the point at which Mom started laughing.

Let’s reflect on that

So my parents’ narrative could be summed up as “I was worried when Stella was born, and now I’m optimistic and I don’t see Down syndrome as something that will limit her future.”

And my family isn’t unique in this way. We have stories from a few similar wonderful parents:

• Beth Ryan refuses to grieve for her autistic daughter, who she loves fiercely.
• Ellen Seidman is fine with her son not meeting all the typical adult milestones. She wants him to have the life he chooses for himself, and it’s okay that that’s different.
• Ellen Stumbo rejects that her daughter with Down syndrome is “less than” in any way, and she believes that Down syndrome has improved her life in several ways.
• Momma Dulock, who has an autistic son, points out that all parents deal with unexpected challenges. Her life may be hectic at times, but she’s happy with it.

Even parents (such as Heather Kirnlanier) whose children have serious medical issues can still find that life gets better. One, two, five, or ten years later, the outcome is usually better than what you thought it would be. You refuse to be miserable forever and you learn to love your life as it is going to be.

Sometimes you have dreams about what your child will be. Maybe you want them to be a doctor, or a lawyer, or heterosexual, or non-disabled, or something else. But when you learn who your child truly is, it may not match those dreams.

And then you let those dreams fade away. And instead you make room for the dreams that really matter: your child’s dreams.

Stella and I have major disabilities. Our parents are, for the most part, happy. That means you can be happy too.