Don't get me wrong....I mean, I understand the essay. I get the concept that you plan on one thing and end up with another, but it's phrases like "slower-paced" and "less-flashy"that make me shake my head... so I'm going to get it off my chest once and for all. And let me start with...
I will never agree with the statement... (that for the rest of my life) I was "supposed to be somewhere else" and that "the pain of that will never, ever, ever ever go away" or that (my son's life with a disability) is somehow perceived as a "very very significant loss of a dream."
HuH?!?
Even if Emily feels this way, wouldn't one "ever" be enough? (never ever ever ever ever ever ever ever ever )
And for her, I guess her dreams for her child were extremely grand, because the loss of them wasn't just a loss, it was a very very significant loss.
Is this redundancy and emphasis necessary?
Nobody that I know brags about being in "Italy" and how "wonderful it is there" while I am stuck in Holland looking at the windmills.
A change in flight plan? Yes. But there I must stay? um....okay....but I must? or....I get to!
Alright so I've picked it apart enough.
I've read the essay a hundred times and I've never agreed with it.
I get it, but I don't agree with it.
Maybe I'm the only one.
Maybe not?
So in case I'm not alone, I will suggest a different destination...one that I feel better defines my personal experience with being a mom to a child with a disability.
Here goes....
People never ask me what it's like having a kid with Ds, but if they did, I would say-
Welcome to the Magic Kingdom
If you've ever planned a trip to the Magic Kingdom, you know by reading about it and hearing other people's stories that you are going to a place like no other. This is a place where imagination and fantasy are a reality at every turn. You are told that once you enter the gate the magic begins, and that feeling of elation and joy remain with you as long as you are there.
You can hear about it and read about it and anticipate it all day long, and you think you're prepared for it because you've done so much work planning your trip. But the moment you walk down Main Street USA for the first time for yourself, you realize you had no idea how incredible this place really was. There are no words to describe it, because there is no other place on earth like it. There is not one detail left undone; not one stone out of place; not one person out of uniform; not one chip in the paint, or piece of gum on the ground. It's more than you had imagined, because the colors and sights and sounds are beyond anything you could have dreamed up yourself.
But your realize there's more for you to do here.
You thought you were here to just enjoy the park, but you realize there is work for you to do, and while you are delighted at each and every turn, you discover....
Liberty Square-and you stand a bit taller and walk a bit more proud knowing this place allows you freedoms and choices you didn't know were available. And if you find that there is a restriction that you don't agree with, you now know there is a place like Liberty Square, where you are allowed to make that freedom a reality for you. Your confidence in this takes you onward to...
Fantasyland-where you get on a little boat and travel the world, only to realize it is a very small world indeed, and that there are hundreds of thousands of people just like you! You spend the next part of your day humming that little tune....as you take the Skyway to
Tomorrowland-where you spend time dreaming of the future and all the possibilities and potentials that you learned about and demanded at Liberty Square.
And while you're there experiencing the most incredible joys of your life, you realize something else about yourself....a mother bear inside. You've been at the park long enough now and it was bound to happen...you felt that tinge of discrimination and injustice. You didn't know that hearing the "r" word was going to offend and hurt so much. You want to start a campaign to end it! And off you go to Frontierland-the place where you can pave the way where no path exists; tearing down trees and prickly bushes all the while loudly proclaiming your defense and allegiance, your pride and adoration. You boldly go where no one has yet gone before you, and you marvel that your efforts can make the world a better place not just for yourself and the ones you love, but for others that are at the park with you, and those that will visit after you.
It's Adventureland at its finest.
Like my friend Tim said when he read the essay....we've come a long way in our thinking, our language, information and knowledge since 1987.
Raising my child with a disability is like discovering freedoms, dreams, adventures, hopes and opportunities that I didn't know even existed. And I can't get on the bandwagon fast enough. I can't buy up enough travel guides and maps and I devour each and every one. I go online and share with my new friends who have also been to the Magic Kingdom. I can't talk about my son enough and if I could get away with it, he would be the topic of every conversation. I am happy. Encouraged. Delighted. Never alone. I have experienced depths of love deeper than what anyone ever told me I would. I never want to leave this place.
I am not supposed to be anywhere else on earth.
I have not experienced a loss of any kind.
Nathanael James is a GIFT.
22 comments:
My fourth daughter was born in Aug 08 and we were told on day two of her life she may have Down syndrome. She did/does (This has been very hard for me, but I am not writting about that). A freind sent me Welcome to Holland (I guess she thought it would "cheer me up") It made my cry, because I did not want to go to Holland and I did not want to be in Holland! I love your story.....Thank you, you were not the only one who felt that way!
I wanted to add, that I already had three girls and I was in Italy. And my fourth was just going to have to join us!
Wow, Jill, that was incredibly beautiful and well put! I totally agree with you. I never picked apart the poem and I've only read it a couple of times. It just didn't fit me... besides, I like Holland so it's not a big deal :-) Anyway, I so relate to the mother bear instinct about the "R" word. My own mother used it this weekend and I had to correct her. It wasn't about JM, but it doesn't matter. What a great way to relate our little guys w/ Ds to a trip to the Magic Kingdom. That's excellent. I think EPK's poem, dated in the mid-80's, is just outdated thinking. Your words would inspire so many new moms -- it's got to get published! With your permission, I'd be happy to put it on my blog w/ your name. BTW, have you seen the documentary, Praying with Lior? It's available through Netflix about a Jewish boy w/ Ds who makes it to his Bar Mitvah. He's so close to God, it's truly inspiring. Only one part bugged me... the dad, a rabbi, calls his son retarded. But I think in the context of the film, he doesn't mean it in a mean or derogatory way. I think you'd really like it. Warning: I cried my eyes out in a few places.
WOW! I've never thought of it in that way (Welcome to Holland) You're right! I love what you've written- beautiful and so encouraging. Just reading this makes me so excited to see what the future holds with our Bennett. Thanks so much for this!
Monica, I would be honored to have you put this on your blog! of course you can
Jill, I am so glad you dissected that poem. The first time I read it, I felt sick. I mentioned that this poem didn't "work" for me in a post a while back. I am going to go back and link it to this post of yours!
I should have known I was headed to Disney World since Minnie and Mickey came to visit my daughter during her PICU stay, lol!
Really I've been trying to find the words to explain how Awesome this is Jill...and all I can come up with is...Awesome...so Awesome.
I don't have any idea what this poem is that you're talking about but I hear what YOU are saying. You have a gift and you see it that way. What a blessing. Keep up the good writing!
I received this essay many times when Bridget was little. I do think EPK was trying to be encouraging, and deeply loves her son. I understand the metaphor about the unexpected journey having great value, but some of the images and ideas were tough for me, too. I don't love it.
I always think it is a little strange when someone without direct experience with Ds (or "special needs") gives it to me, although I know the gesture is sincere and with the best intentions.
I also think the original essay gives some parents great comfort, but I like your version better!
A good friend sent the Holland poem to me. At the time it was a perfect fit. Our lives had turned into shear hell as we tried to deal with my toddler's as yet undiagnosed autism. I found out two days ago that my new baby due in December '09 is a boy and will have Down's Syndrome. I can't remember all of the Holland poem words, but I didn't think it was talking about DS babies. I really thought at the time that this woman was experiencing some of the heartbreak and terror I was having, but that there was hope. By the way...we've since left Holland, and I don't want to see any more tulips thank you! At the same time, the news about my new baby-boy-to-be is still too fresh for me to plan a trip to the magical kingdom either. I'm coping, but instead of the happiest place on earth it feels alot more like the crappiest place on earth! I love my son already, and I will do better as I adjust and my baby bump grows and kicks more, but right now it's just too fresh. thank you for listening. I am grateful.
Anonymous,
I really appreciate your story and all you have shared! You've probably looked at lots of info online already, but if you get a chance to peek at my friends blog to the right called "Our Unexpected Journey" I think you'll be so encouraged and really begin to feel the wind of change fill your heart. In fact, the author of that blog commented on this post too, and I am very grateful for the words that she shared ...because of all of my blogging friends, her baby son is the youngest, and we all were able to "be there" in blog-land when he was born! I know lots and lots of moms who would love to hear your story ...and be there for you too. That is why we share so much of our lives with the world-because we want anyone and everyone to know that life with a child with Down syndrome is a wonderful, exciting, fulfilling and blessed life.
The "Holland" essay is written with the language of "disability" in general, however the author has a son with Ds.
I just thought it was out-dated thinking, that's all.
I went through the same (or similar) feelings that most every expectant mom goes through when learning of this diagnosis-but you are not alone, and I'd love to know if you're blogging at all-about your child's autism? About your life in general? Your new baby?
Thank you,thank you for this and for visiting Zoey's site and for your beautiful words.I agree with you 1000%!!! I was suppose to be here.Our lives are suppose to be just the way they are right now in this moment.Every aspect has been planned perfectly by God who knew just what we needed.I would not change one single thing.Although it has been extremely difficult to watch Zoey endure all that she has,we would not change the course of our journey with this magical child.I post the "Welcome to Holland" poem as a reference to others who come.Those who find comfort in her words but if it is alright with you I would love to do a post on yours and leave it as a link for others.Thank you again Jill.Nate is absolutely darling and I look forward to coming back and traveling alongside you on your journey in the Magic Kingdom!
Heather, I would be honored...not only to have you do a post on mine, but honored to travel alongside you-and Zoey on this most incredibly journey. Thank you for your comments, it means so much to me. And congrats on the birth of your first (and beautiful!) grandbaby!
From Holland to The Magic Kingdom. Now that's what I call the "Trip of a Lifetime". Wow! Jill, you should publish. And I mean more than a blog. "God, please give direction" Amen!
This makes 'my allergies flare up' if you know what I mean. It's even better than how you described it as the thoughts were marinating. This is an inspired piece of writing (yours, I mean..lol)
Very proud of you.
And to think we were so apprehensive just 2 short years ago. Nate's lucky to have you as his mom.
Jill, I love your essay. It is very inspiring and should be published!!
I cried and cried after reading "Welcome to Holland". I had never been to Italy, Matthew is my first so I the images and ideas that EPK's essay presented just struck a chord with me. Then my aunt, who works with KLM Airlines, reminded me of how beautiful it is in Holland. She's been there many times on business trips. She also said that the pain, as described in EPK's essay, will go away if I chose to use it in a healing way. I've never been to Holland, but from her stories of the country and pictures, it looks very nice. And she was right about "the pain" - it is now a distant memory. So, I read EPK's essay again and it didn't have the same effect on me and I found myself disagreeing with it as you did.
In my opinion, your essay is a more accurate description of what it's like to raise a child with DS. I never want to leave this place either and I am glad to be exploring this place with you.
Jill, thank you for posting your comment on the essay. I loved the poem b/c at the time of my baby's birth it is what I felt. I didn't know any better. I also read Jennifer Graf's book "Roadmap to Holland" who actually introduced me to the poem and got her inspiration for her book from the poem. When I read her story and the poem, I felt a wave of peace. I was not alone in how I felt. So I named my blog Windmills and Tulips after a comment included in the poem. After two years of living with my baby girl - I realized that the poem has now taken a different meaning for me. Holland is no longer the physical place Holland in the poem. Gaby and I found Holland in eachothers arms in my own home in NY. In in my arms I saw the magic you talk about. I'm not in Italy nor am I in Holland or the Magic Kingdom. I'm with my baby who has blown me away with the miracle of who she is right here in NYC. Thank you again for your honesty. I needed the poem. xox
This is the first time I have visited your blog,and I think I'll have to add it to my favorites! I also have a Nathaniel with DS, my youngest of ten. I also read Jennifer's book(Roadmap to Holland),and loved it.Though my experience with Nathaniel has been different, and I have had some disappointments and anxious moments, I also never really connected with the poem.Maybe if he had been my first or second child I might have had my "ticket to Italy", but at this stage in my life I pretty much just get on the plane and let God do the planning! Every child is different, every child is precious, and your analogy of the Magic Kingdom rings true for me!
I am not even sure how I stumbled upon your blog, I think through my friend Heather. None the less, I find it so funny how you hit on the exact points I found disturbing in that poem. When my Presley was born, and so many people made refernce to "Welcome to Holland", in the hopes of easing my anxiety and fears. I, too, hated the 'pain that will never, ever, ever, ever go away' part, I remember thinking 'jeez, that sucks - this pain will NEVER go away?!' And she was sooooo wrong, 17 months later, the pain is LONG gone!
Thanks for a beautiful post!
This is such a great way to view things. Wouldn't it be great if when they gave you a prental dx that you got some of your words above. Love it.!! Just seems so much more up beat and uplifting.
Just found your blog--I love this! "Welcome to Holland" was good while I was going through the trauma of receiving Miss B's diagnosis, but now that I've moved past that...it just doesn't seem as hopeful as I would like. I love this analogy instead!
I liked "Welcome to Holland" at first and there are some parts I still like. My husband and I were just talking the other night that we do not at all agree with the part "supposed to be somewhere else" and that "the pain of that will never, ever, ever ever go away" or that my daughter having DS is a "very very significant loss of a dream." I think I am exactly where God wants me to be and so I was always supposed to be here enjoying a daughter that is more wonderful than I could have dreamed her to be!
Post a Comment