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.
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!
ReplyDeleteI 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!
ReplyDeleteWow, 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.
ReplyDeleteWOW! 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!
ReplyDeleteMonica, I would be honored to have you put this on your blog! of course you can
ReplyDeleteJill, 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!
ReplyDeleteI 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.
ReplyDeleteI 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!
ReplyDeleteI 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.
ReplyDeleteI 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.
ReplyDeleteAnonymous,
ReplyDeleteI 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!
ReplyDeleteHeather, 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!
ReplyDeleteFrom 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!
ReplyDeleteThis 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)
ReplyDeleteVery 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!!
ReplyDeleteI 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
ReplyDeleteThis 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!
ReplyDeleteI 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!
ReplyDeleteThanks 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.
ReplyDeleteJust 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!
ReplyDeleteI 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!
ReplyDeleteHi. I came to know about this poem from one series of discovery channel about raising a disabled child & thats how I found your blog. Must say I have got inspired from you.really true , honest , straight from the heart, touchy thoughts.
ReplyDelete6 years ago, I was pregnant with identical twin girls and thrilled because I had always wanted twins. I already had 3 children, and this would "round off our family". At 28 weeks, one twin died ineutero and the other had to be saved with an emergancy C-section. A series of strokes and brain bleeds left her with Spastic Quadraplegia a form of cerebral palsey. Now 5 (6 in Sept), she cannot walk, talk, or sit up unassisted. She has a feeding tube, as she can only eat pureed foods and the effort to eat burns up what calories she gets from the foods, and she was diagnosed with Failure to Thrive at age 2 (feels like a diagnosis of Failure to Parent). We were grieving the loss of one child, the partial loss of another, and I was greiving the loss of birthing and holding my newborn from the start, as she was wisked off to the NICU where she lived for her first 55 days of life. As she grew and programs and people we never knew existed came to help us, and introduced us to other programs and people, we saw what and "adventure" this experience could be. As we were able to properly grieve, and begin our new adventure, we saw the true blessing she was to us and our other children. We began to cheer each milestone, no matter how small, and as her personality began to shine through as best she could show us, we adapted, adjusted, and accepted. She is the light of our family, now. When she laughs, we are all happy. Her siblings adore her and she charms everyone she meets, yet she can't utter a single word. "Welcome to Holland" spoke to us through this time, it WAS how we felt it was a very good example for explaining our lives to others.
ReplyDeleteWe have friends with special needs children who still morn their "children that could have been". They so need "Welcom to Holland", as they are not ready for "Majic Kingdom", though they are going through the steps, they keep wishing they hadn't visited Holland.
We share "Wellcome to Holland" with many families who ask "How do you do it?" or feel sorry for us because of our special needs daugher. It fit our way of thinking at the time, as we ventured into this new world. We have surpassed her thinking, but know many families who need THAT essay.
That being said, I LOVE your essay. This IS how we feel, now. My husband commented the other day that she had too many nevers in that essay and it seems she isn't quite ready to be in Holland, though she's enjoying it. We ARE ready for Holland, and so we've moved on to the Majic Kingdom. But, it has been a long journey.
I can completely understand jumping straight into the Majic Kingdom with other special needs children. We had one more child after our experience, and may not have had her had we not lost our twin. We love all 5 of our children the same and would LOVE more. We have decided in the future that we will adopt, and since we've been through --what some term as a trajedy-- this blessing, already, we are prepared to adopt special needs children, to give them a loving home in the Majic Kingdom!
God Bless You! Cannot wait to share this with my husband!
Unfortunately I tend to disagree with the statement made in the beginning ... for parents like us (and we are a few in SA) we understand, feel exactly the same way as the poem states it ... it is as if it was written by myself!!
ReplyDeleteAnonymous, I agree with you. I have accepted and moved through each stage with my child, but as we pass out of childhood there are milestones that he may never achieve. Yes, I did feel sad when all of his friends graduated at 18 and he stayed on at school. I felt sad in September when we weren't packing him off to college. There are milestones that we share with people in Italy - eventually he will graduate, he will get a job, and he will live away from home, but we do go through these milestones at a slower pace. There is nothing wrong with admitting that you feel grief or sadness for the dreams you had for your child - it does not diminish the love you feel for the child that you have now.
DeleteJill, I gave birth to our third son three and a half months ago, he was born with DS and a heart condition. I continue to be consumed with grief, I hope and think I know it will get better with time, but now it is all consuming. The poem really fits how I feel, though I told my husband maybe we get to go to Italy and Holland. I can only hope one day I have the peace with everything as it seems you do.
ReplyDeleteStacey, thank you for your post. And your honesty.
ReplyDeleteI appreciate what you have written.
I wish I could correspond with you, and see your little guy.
There is only one way to have peace. By asking for it.
The Bible says, 'come to Me, you who are weary, and I will give you rest.'
I hope you come. I hope you ask. I will be praying for peace in your life.
I would love to correspond i am seeking anything and everything that might make me/everything better, I have contacted a local DS organization and have spoken with a few parents...
ReplyDeleteWe had open heart surgery, Thursday, everything went well, that is one hurdle behind us :-)
I am a grandmother to a beautiful newborn with Down's Syndrome. I just was read the poem that you refer to by my eldest son, who is the father of this baby girl. It was a precious moment- one I never will forget.
ReplyDeletePoems are seldom meant to be literally dissected. The essence of the poem remains,the idea is beautiful, and it is from the heart.
I've always felt EPK was referring to a child like mine, a child who is severely and profoundly handicapped. WHile DS is a disability, its not nearly the handicap that being non-ambulatory, tube-fed and blind is. You, my friend, are one of the lucky ones. I do believe you are able to experience the special needs world through rose-colored lenses when your child has something as mild as DS. While your writing style is beautiful, and I'm very glad your journey with your special needs child has been beautiful and joyous, you feel like this poem in no way dictates your experiences of being a parent to a special needs child because in truth, it doesnt. This poem truly isnt for you.
ReplyDeleteI too am glad that your journey has not led you to feel these things. I hope that continues as the feelings described in the poem are draining and difficult to deal with especially when you feel that you have to always be seen as coping and happy.
ReplyDeletePersonally i have found similarities in my feelings in both the original poem and your blog post.
The poem was shown to me at a time when i needed to know it was ok to feel any negativity towards the situation and that i was normal and OK to feel like i wasn't ALWAYS coping. Especially as i am doing it on my own as a single parent miles from my family and friends.
While the poem mainly concentrates on these feelings it is not saying this is all the feelings there are. Clearly there is always great joy in any child and raising them and Chloe will always be a constant source of pride and joy for me. Her condition is not well studied and therefore unpredictable but we celebrate every acheivment and milestone she gets to no matter how late but equally there is always a small sense of loss everytime you realise there is something else she will not do. I find the poem a definate comfort when experiencing the feelings of dread and all encompassing fear everytime i hand my child over for more surgery and it helps me aknowledge them as ones that should never be experienced by anyone. It helps me make peace with them and feel that its ok to feel these because on the otherside when she wakes up a bit healthier we can start feeling the joy again.
I am glad the poem is not for you. It means you have not had to aknowledge and deal with these feelings. They are like demons in your heart.
I have always welcomed and appreciated all comments from readers on this topic. The author of the original poem did in fact have a child with Ds. I feel like the poem IS (or was written for ) me since my experience with having a baby boy born with Ds is exactly the same as her experience. That being said, my heart goes out to you in your great struggles and if comfort can be found in the original poem then I am very happy for it. Since the poem was born from the experience of having a child with Ds, and not because of other, more difficult disabilities, it is that with which I took issue.
ReplyDeleteI love the poem Welcome to Holland; in fact I googled it to send to someone that just received a beautiful baby that was born with DS. My daughter was the third DS child born in our family. She was not a "shock" but a gift as is her twin sister, especially when I was told I couldn't have any children. "Holland" is a lovely poem given to and read by distraught parents that are in need a some quick comfort. The hospitals give it out with the "packet of information (U of C Chicago, for myself). Maybe you should send your story there for them to make copies for parents, It may help, like Holland comforted me.
ReplyDeleteThanks for the other perspective on having a disabled child...I think for people outside of this world Welcome to Holland can be a helpful way of expressing how a parent may be feeling that they may not have considered. But it is wrong to assume that everyone feels the same, and its important that people know every child brings immense joy to their parents. Really glad I stumbled onto your blog when searching for the poem to share with colleagues who work on a team supporting families with disabled children.
ReplyDeleteHi, thank you for the encouraging blog, as of the Welcome to Holland, i believe the author was just being true and being honest to herself, how he felt...but on the end of the letter she said...
ReplyDelete"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."
Thank you for your comments...I check this post often as I can tell that people still read it even though I posted it 2 years ago. I agree that the author was being honest. I have read lots and lots of blog posts from moms being honest with their feelings. I have found that there are two very distinct and opposite points of view: the first is Holland, the second is Disney World. I guess that is the best way I can describe it. Some moms are very distraught with the news, and other moms are hardly fazed. I believe virtually every mom eventually comes to the same place though...and that is that they are over the moon for their kid. I wrote this essay because I didn't want the Holland point of view to represent all of the emotions surrounding a Ds diagnosis, because it doesn't. But for many years there was no other point of view represented, anywhere. I have said in my post that the Holland essay has indeed helped many moms and dads; it has spoken to them in a way that nothing else has. But it did not and does not speak to me, and I have found that there are a lot of moms and dads who needed a different destination...I hope I offered that.
ReplyDeleteI think that your poem has the benefit of experience and hindsight and is probably useful and inspirational to those who also have experience and the benefit of heinsight. Welcome to Holland has it's own qualities and merits for those who have not been as fortunate as yourself in their experiences, lifestyle and in developing resilience. Everyone is an individual and such experiences everything in a unique way so therefore there is no wrong or right, no black or white way to feel or express your own personal thoughts and experiences.
ReplyDeleteI understand where you are coming from..but I also see that some people need permission to grieve the loss of a typically developing child and this poem helps..If your only child was a disabled child..it might feel different to you. You would not have all the things that a parent gets to experience..life is different..and depending on the disability..not always roses. I never got to experience a "typically developing" child..and I do feel a loss..I watch other children do or say the cutest things and I am happy that I have 3 wonderful beautiful autistic children, but I am sad that I didnt get to experience some things like other people. That loss is there for me..and others like me. I dont take away from the joy and the feelings you have..I just want to share that not all stories fit this poem..but some do. I will always be sad that I don't get to have typical teenage arguments with my children..or get to teach them to drive..or watch them go to college..or watch their wedding..depending on the severity of a disability..there are many things you miss out on..my oldest autistic child also suffers from severe food allergies and cant eat 90% of foods and she is also a type 1 diabetic..imagine trying to teach an autistic child to cook and care for herself with such life threatening medical issues?? My life is certainly not Italy..and I grieve for me..but I grieve for them as well..Bree
ReplyDeletea. i agree to the point that we all DO feel loss. yes, there are amazing things going on and others just cannot grasp it.
Deleteb. this life was ordained by God before our own births. this is the life my family was predestined to live.
c. how sad that you refer to them as your "autistic children". thinking that way will fuel your longing for "typically developing children" and both labels are gross.
Let me make clear I'm not the original poster. I'm the aunt of an adult born with a single but impactful disability, and I myself am disabled (hemiplegic) through an incurable illness acquired a dozen years ago. I certainly won't argue with point b. While I am a theist, I do not believe God preordains such things. I believe God developed a natural order for the universe, and that natural order includes things we'd rather avoid---such as disease, accident, and foul play. That said, religion is highly personal, and I don't argue about it. Point c, however, strikes me as unwarrantedly judgmental of this person's experience. And the whole thing about language (which arguments I've been exposed to since the early '80s when working in services to disabled populations) strikes me as counterproductive. What is wrong with calling an autistic child an autistic child? I know some people prefer "child with autism," but there are also disabled persons and disability activists who don't support this reversal of word order. My Deaf nephew (or deaf nephew) would never call himself "a person with deafness." Ditto my blind friends. None call themselves "people with a visual impairment." It's clunky, and it actually, in the minds of many, does the opposite of what is intended. By making the language so unnatural---or by not referring to the disability *at all, as if ignoring it were the only way to remove it from possibly being labeled "abnormal"---it makes it seem as though there were something shameful, secretive, impoverished,, or morally suspect about having any sort of disability. I find there to be nothing sad or demeaning about the original poster referring to her children as she does. I refer to myself as disabled much of the time, and I am one very proud, open, and competent disabled woman.
DeleteI love the Holland story, but maybe it's different when looking at different "disabilities". I have never had to be in the world of a DS child, but I have been the world of many autistic, bipolar and anxious children. Sometimes children can't be brought to Italy to join the rest of the family, it's just not possible for some. I take the story as we have to adapt our lives for our special child vs. trying to make a child (who won't ever really be able to) adapt to our needs.
ReplyDeleteI find it interesting that your alternative "poem" is modeled on Disney World - a plastic, profiteering sudo-reality where people go to spend copious amounts of money in order to find a sense of "imagination" which they are unable to create for their own children. By contrast to your piece of writing, the author of "Welcome to Holland" places the perspective of a parent with a disabled child in a tender reality. It is clear from her poem that she by no means negates the sense of wonder and joy experienced when raising a child with special needs (this is only emphasised further by her analogy of a journey which, although different from the one in which you were expecting, is nevertheless rich with discovery). I can only conclude from your piece that you are deeply uncomfortable with the sense of frankness which EPK so elequently describes. My son has a rare genetic condition called CHARGE syndrome where he lives with severe deafness, feeding and breathing difficulties, a heart defect, no balance and severe mobility problems amongst others. I would consider it an insult to him to sugar-coat his struggles in the manner in which you describe. I'm sure if he had the option he would rather not writhe around on the floor, frustrated and crying whilst battling to support his weight while the other children in his playgroup happily crawl around and play. So yes, as EPK says, "the pain will never, ever, ever ever go away"- the pain I feel for my son when I see what he has to struggle with everyday of his life. Having a disabled son and acknowledging the reality of his complex needs and my own endless struggles to help him brings us closer as human beings-In a more tangible and organic journey of discovery in which we can share our own UNIQUE senses of imagination- no theme parks required.
ReplyDeleteI resonate with the reply above from the parent whose child has CHARGE syndrome. No matter what kind of child you have, even if you have a "normal" child, it's hard. Part of parenting just stinks (sometimes even literally). I admire parents with special needs kids who are not embarrassed- who are proud- who cherish their kids-- and the author of Welcome to Holland does all those things, just as the author of Welcome to the Magic Kingdom. Both authors also concede that it's difficult. Whether you're feeling a pain that never ever goes away, or bushwhacking through new ground in Frontierland, it's all a way of dealing with pain. Raising any kid is painful. Raising my "normal" kid is painful. Raising my "special needs" kid is just as painful, but also requires me to do a lot more work than does raising my "normal" kid. It's okay to acknowledge pain. It's not an insult to your kid to concede that they're not a joy every minute.
ReplyDeleteMy first introduction to this poem was in a support group for infertility-the analogy fit much of what we were feeling at the time. At this time in my life I have felt as though I have been sent to "Holland" more than once and each time I have learned to accept with joy the change in travel plans. I am even now faced with a possible change in travel plans with my youngest, we are possibly going to "Holland" again. It was not expected, he's 21 months. I understand both Holland and Magic Kingdom perspectives, people need both. Any unexpected change in travel plans takes some getting used to.
ReplyDeleteI googled to find the Holland poem. I found your blog. I also found this one that I think many will find interesting. I know I did.
http://www.lovethatmax.com/2011/03/interview-with-author-of-welcome-to.html
I really like this! Hope others do as well.
ReplyDeleteWelcome to Holland Part 2: http://massfamilyties.org/pdf/Holland_2.pdf
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