Emily Pearl Kingsley, an Emmy Award winning writer for the show Sesame Street, wrote an essay in 1987 about having a child with a disability. Her son happens to have Down syndrome. The poem is called "Welcome to Holland." It is posted on lots and lots of websites and blogs.
And I hate it. Absolutely hate it.
Emily Kingsley and her son (born in 1974) have done a lot of wonderful things to advocate for people with Down syndrome. (Her son has even co-authored a book). Everyone's perspective on life is different, and life for people with Down syndrome has changed dramatically since her son was born. She obviously is an amazing writer and has done amazing things in her life, much more that I will ever achieve. I am not knocking her as a person. I just do not like the poem "Welcome to Holland."
Here is the complete essay:
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Welcome to Holland
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 Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several 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 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 for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And 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 experience will never, ever, ever, go away. 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.
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"For the rest of your life" you'll wish for something else? The pain will "never, ever, ever, go away"? Really? That is just not me.
Yes, I grieved when I found out the news about this diagnosis. I grieved the unknown, and while there are still a lot of unknowns, that pain is far behind me. I will NOT spend the rest of my life wishing for something else.
There will be rough days ahead for sure, but they would be a whole lot rougher if I spent those days wishing for a different life...a different child. I just can't relate to that essay.
I do agree that raising children is like going on a trip. For our typical children, I think most of us can reasonably estimate what that road trip will be like. There may be traffic jams, detours, or new roads to take. Things won't go exactly as we imagine them, but with our typical kids, we do have a general idea of where we are going and have an estimated time of arrival. With Levi, it's like the car with the map inside is parked on the shoulder of the highway and we are splashing in a pond nearby. We know we are going in the right general direction but don't know when we are going to move forward. We don't know exactly how far we're going or where we'll end up, but, MAN, are we enjoying the ride!
17 comments :
Well said, April! I like it. A lot of people love to reference that poem, but yeah...
We grieve for the loss of the "perfect" baby we thought we'd have, but then we move on. I love Spencer. All of him. I'm not spending my time wishing for anything different at all.
I don't know. While I am loving the ride and wouldn't change Ella for anything, I do think there will be times, as the gap between her and her peers widen that I will be sad. I know I will get over it quickly, but I don't want to think those moments won't come.
I have gone through a phase in my journey with Kristen where I hated this poem too. At first, I found comfort. Then, I felt like "No, I am not going to Holland, I am going to Hawaii!" Now, I do not completely agree with everything she says in the poem, but I get what she is saying. I feel my whole life I will have moments where I think "oh, if she just did not have Down syndrome." But, this does not mean I do not love her and am not enjoying the ride. It is just the challenges, the delays, the things I wish I could take away as a mom to make her life easier, are what still troubles my heart. I love your honesty on this poem because I do agree that the pain does go away and is just replaced with life. And life is always full of challenges, Down syndrome or not. That is why God takes the front seat on the plane we are on, if we open our heart to Him, and then the journey becomes amazing no matter where we go because He lifts us up and makes His plans the most wonderful plan of all.
True dat!!
That is true, Krista. Thanks for commenting.
I have always disliked the last few lines of that poem. Our organization does not give it out to new parents anymore. I do like your pond analogy and now, rather than use the term "plateau", I will say that we are "splashing in a pond nearby" Brilliant, April!!!!!!!
Good thoughts, Becky. I loved your post about Kristen's Valentines & your special time with her. So precious!
Michelle, you have been such an inspiration on this journey. I am so glad you were there for me right from the start! I will never forget our first exchange of emails when that light at the end of the tunnel came on for me. Thank you.
I feel exactly the same way about everything you stated! THANK YOU!--- I'm not a fan of the "Welcome to Holland" nor I'm I a fan of the term "special needs". Now that I have 3 boys, Colt 18mths,(who has the little something xtra" Cade and Case (twins 5mths). My worries and fears are really no different for any of them. It's just with Colt, I was faced with those fears (the unknown as you mentioned) a little earlier due to all we know because of the xtra chromosome. When Colt was 2months old, I will never forget what his ENT told me. I was a little upset because she(doctor) suggested he had to have ear tubes @ 4months. I asked her was it because of DS? She replied, "I recommend ear tubes to all children daily due to multiple ear infections, not all children with DS has to have ear tubes. She said Colt's ear canal and structure was a normal size. She also said, "Genetics plays a huge role in everyone's immune system, so it could be your genes or your husbands. She asked if either of us had a history of ear infections? (Yes! We both did) -SHE reminded me COLT (yes, has a little something xtra) but is made up of OUR genes! I think I had just read so much, (I knew this), but I got so wrapped in the UNKNOWN ---I guess I'm telling this long winded story because when you read stuff on DS, nothing you read prepares you for the POSITIVES! THE JOY, LOVE and the REWARD (as you would have with any child)----She reminded me Colt is made up of us, so don't perceive all is due to DS!------WE are BLESSED, Just like little LEVI, Colt is very healthy and doing very well!-------In fact, my youngest twin, CASE, 5 months old has to have tubes this Tuesday. Case and Colt, both have my nose, so maybe its my genetics! ha! Also, Case has to have Physical therapy because he keeps his neck turned more one way than the other. So really--Colt's needs are no more than his brothers! I would say Colt's needs are actually less!! :) Thank you April for writing this post! I am thankful for YOU and for Mother's like you! I may steal this when I have time to update my blog!! I want the world to see that our children are no different and bury the "old" perception of DS.
We are def going to have to meet soon! :) I am also so thankful that we live within the same area! :)
It was those last few lines that actually made me love the whole poem. When Russell was born and we found out he had Ds I grieved and I grieved hard...And for that I felt guilty...A Nurse in the NICU gave me this poem during a very difficult time.
When I read her describing it as a significant loss and that the pain would never, ever, go away...I took that as me being allowed to grieve...That it was ok and normal to feel I had suffered a loss, because at the time that is what I felt...The words the pain of that will never go away...I felt that allowed me the right to always feel a sting of pain now and then, and that when I did I didn't have to feel badly about it...There was no time frame that I needed to be "over it"....And the last line about being able to see all the lovely things about Holland...That told me to push past that grief and keep going...That he was still a beautiful little boy and he was going to bring us great happiness. This poem brought me a lot of comfort in the beginning.
I absolutely LOVE reading different views on this poem though, it is interesting how each of us interpreted it and viewed it differently.
This was a great post! I love posts where there is different feedback :)
Christie, I can't wait to meet you, and of course you can use anything from my blog on yours. Thanks so much for sharing your thoughts!
I haven't thought about how the poem kind of gives parents permission to take as long as they need to grieve. Very good points, Jenny. I am so glad to know you through our blogs. It really does help to see different viewpoints on everything. I have learned so much and have come to find some balance in my life by reading the different thoughts parents have about many aspects of this journey.
that's how I felt when I read the poem, Jenny...I do love reading other perspectives as well, though!
I agree that the line about the pain never ever ever going away doesn't gel with me now. but in the beginning it helped so much to know my initial grief was normal.
That line with the "never evers" is the part that bothers me. It just zaps the good parts of what is being said for me. Glad to hear the thoughts of others on this topic. Thanks for the comment!
The poem helped me prenatally. The idea of still being able to take an amazing trip, albeit to a different destination, gave me comfort and hope. Now, I don't really feel sad about Ben but wonder if I will in the future when he is so different than his peers. I have a feeling like my grief will come in waves. Now, my sea is calm and I'm trying to appreciate every moment of it!
I second that. Michelle, you are awesome. You and your Ava really inspired us, then and now. I would like to say thank you as well.
Hah, I thought I was just being bitter for hating this poem too so I am glad you wrote this post. We were sent this poem by a few people we when got our pre-natal diagnosis and I can't stand it.. :)
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