Tuesday, October 5, 2010

Amsterdam International

To fully get this post, please read (or re-read) Welcome to Holland before starting.  Thanks.

In the special needs world, there is a poem (essay? whatever.) called "Welcome to Holland."  It is supposed to explain what it's like to have a child with special needs.  It's short and sweet. 

It skips everything.

While "Welcome to Holland" has a place, I used to hate it.  It skipped over all of the agony of having a child with special needs and went right to the happy ending. 

The raw, painful, confusing entry into Holland was just glossed over.  And considering the fact that this little poem is so often passed along to new-moms-of-kids-with-special-needs, it seems unfair to just hand them a little story about getting new guidebooks and windmills and tulips.

If I had written "Welcome to Holland", I would have included the terrible entry time.  And it would sound like this:


Amsterdam International

Parents of “normal” kids who are friends with parents of kids with special needs often say things like “Wow! How do you do it? I wouldn’t be able to handle everything---you guys are amazing!” (Well, thank you very much.) But there’s no special manual, no magical positive attitude serum, no guide to embodying strength and serenity . . . people just do what they have to do. You rise to the occasion, and embrace your sense of humor (or grow a new one). You come to love your life, and it’s hard to imagine it a different way (although when you try, it may sting a little). But things weren’t always like this . . . at first, you ricocheted around the stages of grief, and it was hard to see the sun through the clouds. And forget the damn tulips or windmills. In the beginning you’re stuck in Amsterdam International Airport. And no one ever talks about how much it sucks.

You briskly walk off of the plane into the airport thinking “There-must-be-a-way-to-fix-this-please-please-don’t-make-me-have-to-stay-here-THIS-ISN’T-WHAT-I-WANTED-please-just-take-it-back”. The airport is covered with signs in Dutch that don’t help, and several well-meaning airport professionals try to calm you into realizing that you are here (oh, and since they’re shutting down the airport today, you can never leave. Never never. This is your new reality.). Their tone and smiles are reassuring, and for a moment you feel a little bit more calm . . . but the pit in your stomach doesn’t leave and a new wave of panic isn’t far off.

(Although you don’t know it yet, this will become a pattern. You will often come to a place of almost acceptance, only to quickly re-become devastated or infuriated about this goddamned unfair deviation to Holland. At first this will happen several times a day, but it will taper to several times a week, and then only occasionally.)

A flash of realization---your family and friends are waiting. Some in Italy, some back home . . . all wanting to hear about your arrival in Rome. Now what is there to say? And how do you say it? You settle on leaving an outgoing voicemail that says “We’ve arrived, the flight was fine, more news to come” because really, what else can you say? You’re not even sure what to tell yourself about Holland, let alone your loved ones.

(Although you don’t know it yet, this will become a pattern. How can you talk to people about Holland? If they sweetly offer reassurances, it’s hard to find comfort in them . . . they’ve never been to Holland, after all.


And their attempts at sympathy? While genuine, you don’t need their pity . . . their pity says “Wow, things must really suck for you” . . . and when you’re just trying to hold yourself together, that doesn’t help. When you hear someone else say that things are bad, it’s hard to maintain your denial, to keep up your everything-is-just-fine-thank-you-very-much outer shell. Pity hits too close to home, and you can’t admit to yourself how terrible it feels to be stuck in Holland, because then you will undoubtedly collapse into a pile of raw, wailing agony. So you have to deflect and hold yourself together . . . deflect and hold yourself together.)

You sneak sideways glances at your travel companion, who also was ready for Italy. You have no idea how (s)he’s handling this massive change in plans, and can’t bring yourself to ask. You think “Please, please don’t leave me here. Stay with me. We can find the right things to say to each other, I think. Maybe we can have a good life here.” But the terror of a mutual breakdown, of admitting that you’re deep in a pit of raw misery, of saying it out loud and thereby making it reality, is too strong. So you say nothing.

(Although you don’t know it yet, this may become a pattern. It will get easier with practice, but it will always be difficult to talk with your partner about your residency in Holland. Your emotions won’t often line up---you’ll be accepting things and trying to build a home just as he starts clamoring for appointments with more diplomats who may be able to “fix” it all. And then you’ll switch, you moving into anger and him into acceptance. You will be afraid of sharing your depression, because it might be contagious---how can you share all of the things you hate about Holland without worrying that you’re just showing your partner all of the reasons that he should sink into depression, too?)

And what you keep thinking but can’t bring yourself to say aloud is that you would give anything to go back in time a few months. You wish you never bought the tickets. It seems that no traveler is ever supposed to say “I wish I never even got on the plane. I just want to be back at home.” But it’s true, and it makes you feel terrible about yourself, which is just fantastic . . . a giant dose of guilt is just what a terrified lonely lost tourist needs.

Although you don’t know it yet, this is the part that will fade. After you’re ready, and get out of the airport, you will get to know Holland and you won’t regret the fact that you have traveled. Oh, you will long for Italy from time to time, and want to rage against the unfairness from time to time, but you will get past the little voice that once said “Take this back from me. I don’t want this trip at all.”

Each traveler has to find their own way out of the airport. Some people navigate through the corridors in a pretty direct path (the corridors can lead right in a row: Denial to Anger to Bargaining to Depression to Acceptance). More commonly, you shuffle and wind around . . . leaving the Depression hallway to find yourself somehow back in Anger again. You may be here for months.

But you will leave the airport. You will.

And as you learn more about Holland, and see how much it has to offer, you will grow to love it.

And it will change who you are, for the better.

© Dana Nieder 10/2010 All Rights Reserved

Please feel free to forward this, blog about it, post it places, etc.  My intent in writing it was to reach families in the early stages of processing having a child with special needs and to let them know that they are not alone.   If you do blog about it, post it on a website, forward it, etc, please link back to this blog (or cite my name, Dana Nieder) and include my email address (uncommonfeedback@gmail.com) so that I could be contacted if anyone wants to reach out. 

Also, if you blog about it or post to a website, please email me to let me know, because I think that's pretty cool :) 

Thanks for reading :)

183 comments:

Jaymi said...

Yep, I'm in tears reading this. All so very true. Thank you for your wonderful insight. While I love the original poem, I can very much relate to this. I have many days when I am still in the airport and so rarely want to make that phone call home. Thank you for sharing your journey.

Foxxy One said...

I'm standing at my desk applauding this post! It's so very very true.

nativegal said...

Oh wow! I hope this spreads far and wide and reaches those who need it most. Dana this is incredible. I am in tears right now as I type. Thank you for sharing this.

Lisa said...

incredible job writing this. i've blogged about this, posted it on a message board and linked on facebook :)

Morissa said...

Oh my. I love love love Welcome to Holland. I have to admit when I read the first couple of line of your post I was angry. I thought you were going to bash it. I am glad that I kept reading. I am sitting here at mydesk- holding my special needs son, balling my eyes out. You are so right on so many of these things. Does that make it easier? Uh No. But it does make me feel a little less lonely in this world, the world of special needs.
Thanks for your post. I will be linking it to my blog on Thursday. I will be sure to send you an email to alert you.
Thanks again!
Morissa- http://morissa-adayinthelife.blogspot.com/

Sara Collins-Sedey said...

Well said. I share your sentiments.

Maria said...

This is absolutely fantastic.

Miriam said...

The Holland Poem always brings tears to my eyes, but your addition is just as powerful. It is hard for people to relate to what we as parents face, but it is good to know we are not alone. Thanks for this!

Jamee said...

Beautiful. Heartfelt. Moving. Thank you for sharing. I plan to pass it on to some friends.

Tanya Dashevsky (Noah's mom) said...

Dana, this is so so good. It's courageous, and so honest.
thank you for including me in your mailing list and yes, I will definitely pass it on to folks who will also hopefully pass it on.

Danielle said...

Wow Dana, that was beautiful. I cried reading it. Thanks for putting that up and writing it. For sharing with us ur thoughts and life. I will be posting this on my wall.

Anonymous said...

THANK YOU! My special needs son just got diagnosed with autism, and I'm stuck feeling like my plane just landed.

Dana said...

Thanks everyone, for taking the time to read this and leaving your comments! If you liked it, please spread it. I think a lot of moms (and dads) feel lost and alone while processing their child's special needs. I would love for this to find its way into as many hands as possible!

Chelsa said...

What an amazing post. Thank you so much, I just posted it to my FB page. I love your blog and enjoy reading about your family!

Maureen said...

Being in Holland myself, I can totally relate - one part made me chuckle and It wasn't until the last few lines that the tears started. I do love Holland and wouldn't trade it for the world!
Thank you, Dana.

erikatx said...

this was great!

erikatx said...

And by the way, I LOVE being in Holland.. I didn’t spend too much time in the airport, but the truth is it was a HORRIBLE place to be, but you do find your way out of there, some take longer.

Dana said...

Thanks for stopping in & commenting, Chelsa, Maureen & Erika!

If you have blogs, feel free to blog about this---please also send me a link, so that I can keep track of where it's traveled!

Erika---I agree, I'm happy here now (most days). But the airport time is totally the worst.

Mama Bear said...

Nicely said! I saw your post on my blog http://mysonhas2brains.blogspot.com/, thank you so much for reaching out and sharing your link with me and my readers. I think it’s important to talk about this difficult stage where we're learning to accept this new life, it's part of moving forward. It's comforting to know that we aren't alone.

sheree said...

Excellent post! I would love to post this on my blog this week sometime (and I will be sure to link back here!)

Thanks so much for keeping it real ;)

The Sanchez Family said...

Tears....so true....so glad I'm MOSTLY out of the airport....

Anonymous said...

thanks. i needed that. :)

Dana said...

Thanks for the continued feedback :)

Sheree (and other bloggers) if you put it up, email me the link---I'm going to make a list of the different sites that it shows up on. It's neat to see it traveling!

The Hapa Girl said...

Boy, did you catch me off guard with this one! I was ready to bash and fight you tooth and nail..but I'm not. Because what you wrote was the honest truth. The real feeling and emotions that are truly felt. Our modern day Holland...

I still love Welcome to Holland, because it described what I felt almost three years ago, in a very nice and gentle point of view. A view that people who are not in our world would understand.

Squid said...

Excellent stuff. I wrote a similar, autism-focused post for BlogHer called Welcome to Yellowknife, about how Welcome to Holland doesn't actually work for most families of kids with special needs as it was written specifically for families of kids with Down syndrome.

My post is Welcome to Yellowknife:
http://www.blogher.com/subarctic-autism-awareness-day-analogy?page=full

But, it doesn't dwell on the early diagnosis days as yours does, an area that needs more coverage -- by the time many parents are in a space where they can write about those days, they're past them. And new parents crave, crave, crave hearing from others in similar mindsets.

So, thank you.

Katie at A List Maker's Life said...

nodding in agreement. tears running down my face. our son with SB was born 20 days ago and is still in the NICU. i feel like i'm still sitting in coach too afraid to step off the plan. thank you for writing this. when i finally feel ready i will definetly be re-posting (with your permissions) on my blog with a link back. hugs to you, a kindred heart.

Dana said...

Hapa Girl, I'm glad that you didn't need to fight me :) And I never thought about the fact that WTH works well for explaining the situation to friends & family, that's a good point. I definitely wasn't thinking about outsiders when I wrote this . . . I was actually thinking, very specifically, about the people still reeling in those first few months (or sometimes years).


Squid: Thanks for sharing your link. I checked it out, and it's very well written---I'm sure it's helped a lot of families :)

Katie: I'm hurting for you. You are the exact persona I wrote this for, still so new to everything and maybe internally overwhelmed but externally keeping your chin up? I checked out your blog, and love your writing & perspective (I think we have similar life perspectives). And your littl guy is so, so adorable. Feel free to email me if you need an ear to vent to. (uncommonfeedback@gmail.com)

Anonymous said...

I have a 10 year old daughter with Down syndrome. And no - I don't wish I hadn't gotten on this plane. I hope when you reread this in 5 or so more years you won't feel this way either.

The Hill Family said...

I have a son who had a liver transplant 3 years ago and this is EXACTLY HOW I FEEL!! You seriously hit the nail on the head. I shared the link with friends and family and told them if they want to know how I feel to read it. It is completely accurate. Thank you for articulating exactly how it feels.

Dana said...

Anonymous---I'm happy to say that this isn't the way that I feel anymore :) I moved into acceptance (most days) ---and am really happy (most days)---nearly a year ago. I just needed some distance before I could write it all out.

Hill Family-I'm glad that you were able to connect with it!

Anonymous said...

We received the news that our daughter had DS when I was 20 weeks pregnant with her. Three years later, I can sit and read this essay and appreciate the honesty of the emotions portrayed in it. However, had I read this in the early days after getting our diagnosis, I would have been scared out of my wits! I would definitely use caution when you post this publicly.

Perhaps I'm not the norm, but in the beginning, I needed to focus on the positives and hear about the happy times families shared with their children to help me fight my way out of the darkness.

Dana said...

I agree, different people need different things at different times :) I, personally, was longing for something like this in the beginning . . . I wanted to "hear" someone else saying "I have been where you have been. It sucks. I promise it will be better, and don't worry if it takes a while to get there."

Lia said...

Love, love, love this. I just read your post on the SWAN Yahoo group, and your girl sounds a lot like my boy! I'll be following this blog for sure.

Angela said...

Wow.

Just wow.

A friend forwarded this to me, saying, "Hey, Angela, you've candidly shared your struggles with the (Down syndrome) diagnosis, here is a blog post you should read..." (Thanks, Courtney!)

Anyway, yes...I sometimes feel like an outcast in the DS community b/c I still, after 2.5 years, struggle. Not with loving my son, obviously, but with accepting the diagnosis and how much our world has changed. My husband and I still fear for the future, and have a hard time with the fact that our son has this dang extra chromosome which makes his life so hard.

Annnnnnyway, thanks so much for this. Unlike another commenter, I would have craved this kind of thing right after Benjamin was born. I was one of the ones who needed to hear, "This sucks. It really does suck. But it gets better." I didn't want to hear the positive stories or see the pictures. Heck, sometimes I still don't.

I will repost this on my blog in a few days, when I get back from the beach. Thanks again!!!

:)

Christina said...

I blogged it today in 31 for 21!
I love it!

Thanks
Christina

Antomhic said...

Brought on quite a few tears but bloody about time to read something so true to reality. I've put your link on my FB page and joined your one!

Carla said...

Very powerful stuff, am glad I read that

Anonymous said...

Beautiful. Thanks for your insight.

Mom2*3boys said...

Thank you for sharing. You posted it on the Down Syndrome Group of Central Oklahoma. Our son Jake was born last December with Down Syndrome and a heart defect. I felt like I had gotten on a ride I didn't want to be on and couldn't get off. Thankfully now there is no place I would rather be...but getting here took a lot....thank you for sharing the truth of our emotions.

Angie

Annabel said...

I read it expecting to be annoyed, but actually, it was spot on! Welcome to Holland is a bit Pollyanna ish. I don’t think I’d give it to a new parent as some skip through the airport without noticing and I think it’s as unfair to foist an expectation of gloom on people as it is to expect them to think it’s all great; but it's brilliant for people who are or who have struggled.

Anonymous said...

Thank you....I'm not alone!! I have read and re-read Welcome to Holland and whilst it's 'nice' i just can't relate, maybe once i've left the airport and been in holland for a few years and am more at ease with this foreign language maybe then i will re-read Welcome to Holland and understand, but for now we are still in the airport and your post sums it up excactly...so thank you

pixiemum said...

This is extremely moving and so very true. I often felt like that from we got our prenatal diagnosis and at many times since. I love my darling girl and wouldn't be without her for anything but this is not the life I wanted for any of us.

Renita Nunley-Ruiz said...

Wow,
I so needed this about 4 years ago when my Isabel was born. I seriously thought about slapping the next person that told me..
" OH, you are so lucky.. Children with Down Sydrome are SO PLEASANT!"
Well, newsflash-I am lucky-I never doubted that.. BUT, she's got a genetic attitude ( from her parents of course.. lol) that is legendary. And yes, The Holland poem is beautiful BUT, when I got pregnant I did NOT count on all the dr's and therapists etc etc etc joining our lives too!! So, Thank you for writing this.. ;)

Jo Mercer said...

When I signed up for the magical mystery tour that is pregnancy, I knew that I would be boarding a plane with no knowledge of the destination. So I find myself thinking: "hey, guys, whoever told you that you were going to Italy? You could have ended up anywhere!" It genuinely amazes me that people feel so shocked and affronted when they have a child that doesn't fit "the norm" in some way.

I have a little boy with DS who is now 8, and I promise you that I never ever felt the way you describe, not for one day. When he was born I loved him. I was fearful for his health, but I honestly would not have turned the clock back for anything.

I am not trying to be provocative or controversial or to cause offense in anyway. But there is another perspective on the birth of a child with SN, and I wanted to share that too.

Thank you for challenging me to think about this again.

best wishes.

Anonymous said...

Thank you! Our son Jem is 2 years old and DS. It has been wonderful to share this reading with my travel companion!

Jem is the best it has happened to us and our families. For all the learnings and experiences. We hope we will be able to give it all back to Jem. ( sorry for my English, as I am Catalan from Barcelona )

And thank you to all the other comments too!

Jen said...

Posting to my blog. Very powerful!

www.lovingpeanut.blogspot.com

Dana said...

Thanks for all of the feedback, I really love reading it, both here and in emails!

I'm glad to hear that this is helping some to feel less alone in some of their darker thoughts.

Jo--I'm glad for you that you never experienced any of the upsetting thoughts that come with having a child with a special needs diagnosis. I certainly don't expect all parents of children with special needs to identify with this piece, any more than I would expect all of the parents to identify with Welcome to Holland, or anything else.

I just think that sometimes it's helpful to hear someone else say some of the hard stuff, the things that you may be trying to push down or avoid thinking about. If I had read this when I was more depressed, I would have thought "Yes! That's what I've been trying to avoid thinking about!" and maybe it would have let me have a good cry, pass it along to some of my near & dear, and open the lines of communication a little. Kind of make peace with it and move forward, in baby steps.

Anonymous said...

I love ya, kid! I can't imagine how difficult a road it is, but I DO know that Maya is incredibly lucky to have parents like you guys.

-Vachon

Kaitlin said...

I'm with Vachon- Maya is incredibly lucky to have you guys as parents! Colin, Kelsey, and I hope to see you soon.

EleanorK said...

As a mother of Alexander who was born with DS over 3 years ago I totally relate to what you write. I have to say that I have struggled tremendously about the negative thoughts and worries I have over what will happen to Alex... this has been compounded by being diagnosed with Breast Cancer last year. I've had the treatment and get checked every 3 months but I worry so much that I won't be around for the Airport trip sometime soon!

I don't for a minute wish that he wasn't around. I have even stopped attempting to 'fix' him. However 'fixing' my own thoughts has been a much harder process...and it seems again that lately the bad thoughts are stronger than the good ones.

Anonymous said...

Dana - thanks for your heartfelt post. It is a good reminder for all of us who try to help families who have children with special needs (I am an SLP). Your version really hits home!

Lucille said...

I completely understand where this airport is. I am just glad that the layover is only for a little while. I also do think that the Holland story is best to give to new parents so as not to overwhelm them : ) Thanks for taking the time to put yourself out there and express many sentiments that many of us have. And as far as the beginning, I wanted to curse and shout and wave my hands in the air too. I am just glad that the final destination is Holland because we can't live in an airport all our lives, you know what I mean. Thanks for sharing.

AF said...

While I never really liked the Welcome to Holland poem, I really can't relate to your version either. Your story is cleverly written, but depicts a lot of anger, resentment and bitterness. I know people who felt this way after their child's birth, but I don't know how something like this would have made them feel better. Insteading of looking for the way out "of the airport", your story would make someone just accept their anger and sit to wait for something to get them out. The reality is that YOU are the only one that can get yourself out, and the faster you can, the faster you can help your child with their needs. My experience is more like Jo's, where I was concerned for my daughter's health and future, but had no feelings of depression or resentment that the birth of a child with ds came to me. I think sometimes people in our situations are so busy worrying about themselves and their shock, that they forget what this child would feel like if it knew that it's parents regretted having it. I am not trying to make new parents of a child with special needs feel guilty, but sometimes I feel like telling them, "get over it and help your child" THAT is the only sure thing that parentig brings....parents need to be there for their kids...and all this "waiting in an airport" does not put you in a frame of mind to do that! Thanks for your take on this story...

Anon said...

I'm surprised by the people who say they never felt that it was not what they wanted, maybe they never said "I don't want to do this," but I'm guessing there have been moments of "How the hell am I supposed to do this" somewhere along the road. It's got to be hard to realize that both you and your child are probably going to face challenges that average people won't. It's well written and I think a lot of people will relate to it and appreciate that even the people who put on a brave face might be struggling in the early phases of a diagnosis.

Dana said...

Vachon & Kaitlin: thanks, friends :) And thanks for stopping in, too!

Eleanor-congratulations on beating your cancer! Wow, that must have been hard to have a toddler with special needs at home, and to battle cancer.

Thanks for the other "I needed this"-type of comments, too. I'm right there with you---this would have been really helpful to me 2 yrs ago.

Dana said...

AK-

First, I am happy for you, that you never experienced any sort of negative thoughts about having a child with special needs.

Second, my story is not meant to depict "anger, resentment and bitterness", but rather anger, resentment, and sadness. Deep sadness.

Third, while your advice of "get over it and help your child" might seem like helpful (really?) to you, it would be like yelling at someone who is crying to stop crying and move on. What I'm trying to do with this piece is say "It's ok to cry, and most of us spent some serious time crying in the beginning. But now, look----we're happy. You'll get here, too."

Also, I won't speak for anyone else . . . but, for me, most of my crying was done laying in bed at night. Or at naptime. No one besides me knew, and Maya certainly wasn't neglected in any way. So to hear "get over it and take care of your child" is doubly infuriating, because my child was (and is) well taken care of, and spoiled, and doted on, and loved.

Fourth, "your story would make someone just accept their anger and sit to wait for something to get them out"--really? I don't think so. I think it might let them accept their feelings, give them permission to grieve, and give them hope for the future---seeing as how once upon a time I felt this badly, and now I'm pretty happy.

And finally, "I think sometimes people in our situations are so busy worrying about themselves and their shock, that they forget what this child would feel like if it knew that it's parents regretted having it." Instead of letting the bubbling rage take over here and unleashing a tirade of unpleasantries, I'll just say that this is a very insulting thing to say----and that no one on this page has mentioned regretting their child.

Elbog said...

Well done. "Welcome to Holland" was given to me within the first few hours after I looked into my daughter's eyes before any diagnosis was made. While I could, at the time, appreciate the allegory, I felt dismissed -- that my feelings and emotions, although understandable, were merely a matter requiring a minor shift in focus, and all would be well. My mind and heart required much more. Eleven years later, I am still on a road less traveled, but much wider than I ever imagined, to appropriate another metaphor.
I consider this to be a welcome addition, although I'd just as soon abandon the whole Dutch enterprise. There is as wide a spectrum of attitude and expression as there is within the realm of Trisomy 21, we are not all (as seen here) as alike as we might seem. My desire is that we can at least accommodate each other to the same level that we expect from others for our children.
Thanks for the essay and the exercise. I'll pass it along as it's appropriate

Anonymous said...

Thanks for the revision. This is more the reality. I'm not new to this, as my daughter with trisomy 21 is 7, but I'm still lost at times (many times) as well, and there really are so few people that can help with the navigation process. My other daughter has special needs as well gifted/anxiety disorder and now I have to be 2 places at once - WHAT!! You said all of what we go through very well.

Anonymous said...

As a mother of a 4 year old with Down syndrome, I am not sure I would have wanted to read your raw account of this journey in the first few months after his birth. In those first few months, as a parent, you need hope and your account of the journey does not offer that. Hope is what kept me getting out of bed each day, and the original "Welcome to Holland" in a much gentler way let me know I was not alone and things would get better.
The first year was a struggle and yes, I had many different emotions. Even through lots of health issues, I never once wanted to turn the clock back to a time when my son did not exist.
What your account does not do if give permission to a new parent to celebrate the birth of their child, which we all needed to do to be able to "get out of the airport" in our own way.
Your account is a good piece for parents to read and reflect on that time in our lives, I just don't think that a new parent who is drinking through a fire hose would be mentally capable of digesting this information properly.

Just my two cents.

Dana said...

The timing of the piece has been the only recurring "criticism" that I've received----when it would be "appropriate" for someone to read it. Interesting, these critiques usually come from someone with older children who haven't been in the airport for a while :)

For me, avoiding reading about the negative emotions that I was dealing with certainly wouldn't have changed the emotions. But that's just FOR ME.

Obviously, everyone needs to choose what essays to read and when to read them.

The birth (or diagnosis, if that comes at a separate time) of a child with special needs is a profound, life-altering experience, for sure. Based on the parents that I've heard from, some find themselves in the dark and just want to hear from those who say "Everything is great here, don't focus on the dark, no worries!". Others find themselves in the dark and want to hear from those who say "Oh, the dark. I was in the dark, too. It's just the darkest dark you've ever sat in, isn't it? You must feel like you're suffocating in the darkness. But I was there too, and I got out. And you will too."

I fall in the latter camp :) I wished that someone would have helped me to acknowledge the feelings that I kept trying to push down. Maybe not immediately after my daughter was born, but within the first month for sure.

To each his (or her) own :)

Knowledge Safari said...

Great post! We hope you join our community at www.knowledgesafari.com

Anonymous said...

I agree completely. If you've never experienced these feelings at all then I applaud your luck.It's nice to have another point of view, no matter if you need it at the beginning or further along on your journey. It just helps to feel that you're not alone. Thank you for sharing.

Kelly said...

Dana,
I am SO glad that I came across this post! WOW- you put into words what I couldn't. I re-posted it on my facebook page - I have about 600 special needs moms and dads that I am friend with that will so GET THIS!!!! I have a five year old daughter with Rett Syndrome www.brooklynbutler.blogspot.com and then just last year my sweet Boston came 2 months early and was eventually diagnosed with Down Syndrome. I think my "arrival in Amsterdam" was actually harder the second time if that is even possible! I just wanted to take a moment to thank you for your words today! www.bostonclarkbutler.blogspot.com

Kelly said...

http://bostonclarkbutler.blogspot.com/

decided t post it on my sons blog too:)

LOVE IT!!

Anne said...

Wow!! Great post. It is so, so true. I'm posting this on my daughter's blog, http://ourgiftsofgrace.blogspot.com/

Devon said...

Thanks for sharing this. It's perfect--so many times in reading this I felt you were expressing exactly how I feel/felt. It's beautiful. Thank you.

Trish said...

Thank you... I posted it to my facebook page.

I find it ironic that I actually live in Holland :)

Jenny said...

I loved this! THIS was exactly how I felt when my son was born!! I reposted it to my blog! Thank you for sharing!
http://thechillitribe.blogspot.com

Dee said...

Thank you! You have just validated all of my feelings over the last 14 months. The airport was the worst. And a lot of days, I felt like I was the only person there! I think I my have finally left though. And guess what, I made great friends already!

Looking Up said...

I so appreciate your honesty. I can relate to much of what you had to say. I'm happy to say that most days I fell like I have "left the airport".

Mel said...

When my first son was born with a bilateral cleft lip and palate, I didn't feel any negative emotions at all. We expected our second child, born 15 months later would also have a cleft, instead he was born with beckwith-wiedemann syndrome. I was still positive and still identified strongly with the original Welcome to Holland piece. 10 surgeries, a trache, cancer scare and now staring down the barrel of an autism diagnosis and I can now relate more to your version. All except the part about wishing you never bought the ticket. Thank you for sharing.

Tracy said...

A friend posted this on FB and I just read it and I had to look it up. I'm glad I did. It's nice to know I'm not alone! I plan to follow your blog and blog about this myself.

Carol said...

Dana, I LOVE this. Thank you for writing it. I hope it spreads far and wide. You did such a good job of describing my feelings in the first year of my daughter's life.

Shannon said...

Love this - Love this

When I read Welcome to Holland I always get held up here: "And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss." Because it just doesn't say enough... your post clearly explains what's been left out. I will be reposting on my teeny tiny blog and sending you the link via e-mail.


Thank you!

Jennie said...

Thank you for writing this. I think is captures many emotions and feelings parents have when they are whirling from the news of a diagnosis or the knowledge that their child is not going to be "typical". But then again, what is typical? Love it and am linking to my blog.
www.enjoyingajourney.blogspot.com

Let Kids Play said...

My son is 18 and is profoundly disabled. I often use Welcome to Holland when I am doing disability awareness for people who are not raising kids like ours. They are very touched and get it at least to the point that it is possible to get it, when you aren't living it.

I would never read or give Welcome to Holland to someone just entering the airport. It takes everyone a different about of time to get out of the airport and some of us reenter the airport more than once.

I think this is a beautiful piece that tells parents that all of their feelings are fine and they don't need to feel guilty about them.

At 18 we are starting to look at adult day programs. They all suck! We are also looking for a great high school for my daughter who is typically developing, great choices. I am not ashamed to say, I don't want to be here, I don't want to do this anymore.

But then I come home and he gives me a huge smile. My daughter comes home and complains & whines. And I say I sure love my son. But can my daughter finish being 13 already--it sucks : )

Thank you for writing this, I always felt that there was more to Welcome to Holland than was written.

Some days the tulips are easy to see and enjoy and other days it is difficult to see them through the tears or the depression.

Yes, it certainly gets better, but for some of us it is a harder road than for others. (Please no pity) I can't imagine my life any other way at this point. I love my kids. I love the work I do making play places more accessible for kids of all abilities--something I would have never done, if I hadn't gone to Holland.

I will post to my blog and let you know.

It is together that we can survive the airport and Holland. What did moms (and dads) do before there was an internet. It must have been so much harder.

Looking for Blue Sky said...

This is much much better than the original. Thanks you xx

Karen said...

I am about to blog this and read this on Lisa's blog (comment from her earlier on) and I am so glad you have taken the time to write this and share it.

Thank you

Nicole said...

I love it. I have a nearly three month old who has a rare form of dwarfism and is still in NICU and have felt all of that!!

Marianne said...

Thank you for this, I love the original and love your take on it. Glad to know there are others who know what this journey is like.

Claire said...

this is so moving! my not so little girl is 12yrs old now and this pretty much sums up most of the emotions I still go through on a daily basis. well put. c x

GingerB said...

I put one of the comments on Love That Max that you read, and thanked us for. Thank you! I thought I got hit with a metabolic disorder that had us on edge about feeding for the whole first year, and after months of my (and only me!) suspecting a problem we got a CP diagnosis at eight months. I feel like an asshat for not being grateful for my child's challenges . . . I AM NOT GRATEFUL! Hannah is a delight and a joy, but damn that airport sucks. This is like a nightmare where you are running though the terminal forever to get to your gate, and you can't ever get there. When I do punches or kicks in arobics class I actually visualize myself hitting STROKE in its asshat face. So seriously, thanks. I'd blog about it but we are in the midst of bonus therapy. Wheee!

Dana said...

I am really, sincerely touched by everyone who leaves a comment here . . . I was really hoping that AI would spread and hopefully find some families who were (or are currently) struggling---to let them know that they're not alone, there are so many people who feel this way! And to give them an essay that they could share (if they're comfortable with it)to show some of their close friends/family some of what they're going through.

I'm really happy that it's spreading, and that it has reached all of you!

Trish---I also feel a little bit bad about continuing the whole "Holland is the special needs country" thing, but it was the best way I could think of to write this. If I ever find myself literally in Amsterdam International, I'm sure I'll have a good chuckle. (Or maybe not, because airports stress me out.) :)

Cynda said...

Thank you for writing this! It spoke to every crevice of my heart and soul. My son was diagnosed with his genetic disorder a year and a half ago and I am still in the airport from time to time. Sometimes, I get to venture out and see the tulips and sometimes I can't even see out the windows. Thank you for putting it in a way that expresses how I feel so I can share it with others.

Two of my friends reposted this in their blogs with links back to you and I will do the same. Thanks!

PS My new catch phrase for fellow parents with special needs kids...Are you in the airport or not today?

Marti crafts said...

Wow, Your writing is very truthful and had me in tears, Snuggled up in my patchwork blanket I applaud your post, very articulate and I will be sharing this with all of my friends, I used to work with disabled children (only taxi-ing them to and from school and rest bite care) I do appreciate there is a world of stigma attatched to disability which we as a world must over come and its by listening to people like you, that the ignorance of some can be conquered.

Anonymous said...

I just love Cynda's phrase "are you in the airport or not today?"!!!! We'll be using that phrase frequently.

Cynda Western Felini said...

I reposted your article on my blog. http://felinidelarosa.blogspot.com/

Thanks for writing it!

Lerka said...

Facebooked it. Thank you VERY much.

Shauna Quintero said...

Thank you for this. I am the mother of a two year old with a severe brain injury. We were in Italy and somehow woke up in Holland when he was 11 months old.

For my personality and glass half full way of dealing with things, Welcome To Holland was perfect at the time I received it.

Now, over a year after his accident, Amsterdam International is perfect. I've felt a version of every single one of the feelings you've expressed. Spot on. And I can only acknowledge that in retrospect. I didn't realize it was so normal and I couldn't have put it into better words than you have.

So a big, fat, Dank je wel! (Thank you in Dutch if you didn't get that. ;-) )

mommy~dearest said...

Love it. :)

Cheryl said...

I read Welcome to Holland---as parents you do feel that way however adding, Amsterdam International is a truer account of how a parent really feels. You are right I did not want to hear anyone tell me...."God knew you could handle it"..."How do you manage" etc...you are right as parents you do have to rise to the occasion. It is just a "different" occasion you rise to...a bit harder road with more struggles and big bumps in the road. More stress and anxiety. We don't need anyone's sympathy because parents of "normal" children have absolutely zero idea of how you feel as parents at all however, like you said, although genuine concern...I don't want to hear it. When all is said and done they go home to their "normal" house..they leave the airport...they are not stuck there.
I have risen to the occasion as you have...some days I cry and wonder how I can manage and how I will continue to manage. Other days are awesome. I can say I wouldn't change my Ally for the world--she is such a joy--her smiles--dancing--singing--perseverance--but...I do wish that things were easier for her and she didn't have to ride the "special" bus and be in the "life skills" class and have an IEP...I wish it were easier for her. But then I feel guilty.
I do know we give her what she needs, she gets what she needs at school, she is surrounded by a wonderful church family, she is happy and full of joy. So, we are slowly leaving the airport....
Cheryl

Anonymous said...

I think it's the people who have criticized this blog entry that make it so important to the rest of us. There are people out there who try to make you feel like you have no right to your own feelings of disappointment and (mostly) fear. Thank you for having the courage to blog about it. I think MOST of us as special needs parents really can relate. Those who cannot are not the norm. It's a beautiful and poignant essay. I'm going to share it on my FB page.

Anonymous said...

Wow! You took those thoughts and feeling right out of my head!! Wonderful, thank you!!

JennieB said...

It's all so true. In my very early blogging days (also very early diagnosis days) I wrote about Welcome to Holland compared to another post, called Welcome to Beirut. You can read my post here (it containts a link to the Beirut essay): http://www.wantapeanut.com/2009/08/windmills.html

Dana said...

Again, thanks to the folks who are leaving their thoughts (especially the nice ones) :)

Jennie-thanks for the link. I've seen that Beirut essay before but never really read it. It's an interesting take for families dealing with autism, I would think.

My Holland's world said...

Helena said:
Dana, I am so glad I found your website. Thanks so much. I am in tears reading your insights. They're all true and I am totally related to this. I am still in very mixed feeling: Anger, Denied, Sad, Discourage...You named it. I hope that it won't be really long from now I will be able to get out from this airport.

Finding Normal said...

You hit it. Exactly. I will be sharing this!

Bugg's mama said...

I found you!

You emailed me awhile back and I read this post, then lost it before I could get back to you. Then I saw your link on another blog. Wahooo!

I think this is a great post. Spot on, you got it, mama. I am an optimist by nature - hearts, flowers, rainbows - that's me. But truth is, the "special life" hit me hard. And brought me down with a slam. I had to be in the darkest pit, though, in order to be in this beautiful place I am now. Thank goodness I'm here now.

Thank you for sharing this post with me.

Love, Bree

ekdrue said...

I found this today on the Autism Speaks facebook discussion about the original Welcome To Holland essay. I do like Welcome To Holland, but I first read it just days after my twins were diagnosed with autism. Now they are 6, and I like your version much better. I see it as a companion piece to the original.

Skimming your readers' comments, it seems like the two main camps of parents here are autism(ASD) and Down's Syndrome. It also seems like the people who are bristling at your comment about wishing you'd never bought the ticket in the first place are from the DS camp. They don't seem to be very understanding about the fact that ASD is a very different creature than DS, and so the attending feelings can be very different. And yes, we did expect to go to Italy, because ASD shows up much later in children than DS does (months or even years later), and there's no prenatal test for it. We thought we were already in Italy-- why is that so terrible?

I am willing to go in front of the firing squad and say that I too have had days where I wish I'd never bought the ticket. It has nothing to do with how I feel about my sons; it's more about how I feel about myself as a mother on those days. Thankfully, those days are less and less often, as the depression lifts and time passes. I've been out of the airport for a while now.

Very glad to have found your brilliant post! :-)

Lynn said...

Dana, thank you for this wonderful variation on a theme. So true. Although I do have to add that after 12 years of living in Holland, growing to love tulips, windmills, and wooden shoes, there are still days I wish I had never traveled. Honestly. It is SO much work to live in Holland. I love it - it is beautiful, my life is so definitely richer because of it, but it doesn't change that Holland is an exhausting and still scary place to live.
Thanks for joining in the fray. Keep on writing!

lisa said...

yay for 100 comments!!!! and just imagine how many others have read this and not commented. i am so glad that this is reaching people that will benefit from it!

Emilie said...

So very true!!! THANK YOU!

Connie said...

Thank you for emailing this to me! I was really moved by it and of course could really identify with it.

Best wishes.

danette said...

Well said. My experience was a little different in that we left the airport believing we were in Italy with just a brief detour... it took quite a while to figure out what the heck was going on. I've never wished that I didn't take the trip, but have questioned my own ability to handle the demands of the trip at times. It does get better though, and I like that you offered that hope and encouragement even while acknowledging the rough emotions in the beginning. Thanks for sharing!

Rens said...

Although me and my DS son live in the only place where 'welcome to holland' doens't make much sense, I recognize the emotions behind both the original essay and your addition. Thx.

Rens, the Netherlands

PS there's been some political upheaval here in Holland cause Amsterdam International Airport signposts only in English :)

Anonymous said...

Dana this was wonderful to read. As parents there are always challenges we face regardless of the child we have. I think its helpful for all parents to read!! Smooches from Shaunte & Sammy

Anonymous said...

In tears...well said. navigation through the airport, finding baggage claims and a ride into the city can and is indeed a dim lit tunnel, but through it all it can make one a better person. I wouldn't trade my experience and, altho' I didn't actually give birth to this little person, I have been along the duration of the journey and it has been the GREATEST blessing in my life. Holland is wonderful, it's the journey getting there and realizing this is not where I started out for that's the toughest or was for me!

Dana said...

I don't want to keep jumping in to just say "Thank you" and "I'm glad that it connected with you" repeatedly, but I do want to check in to let folks know that I'm still receiving and reading the thoughts of everyone who stops by and decides to leave a comment :)

Danette-great point about "questiong your ability to handle the demands of the trip"---I think we all feel that way from time to time (whenever things get challenging).

Rens-It made me laugh that "Welcome to Holland" wouldn't really add up if you live in Holland (literally) already :)

starrlife said...

Hmmmm.... I got this email promoting this post. I read it and have read all of the comments. I guess I would say that my major obstacle is similar to one that I've observed in the stay at home vs working mom and breastfeeding or no breastfeeding and natural vs ceasarean birth issues. Polarization.
I think that having a child with a slew of lifethreatening medical problems is undoubtedly a desperate and frightening time and many children with 'special needs' are in that boat.
I'm going to go out on a limb and say that when ANY child is born each parent goes through a transformational process -some good, some not so good. All mothers are not the same in their response to mothering any child. Some have postpartum depression, some hate their children unreasonably related to psychological issues, some abuse their children despite professing love- parenting is not a Hallmark Card process in any circumstance except for a certain percentage (maybe:).
I have a daughter with DS. I did not feel overwhelming despair when she was born but do not judge those who do. I have had a life full of differences so my expectations were not of the Hallmark variety and that protected me to some degree I think from deep sadness and anger when she was born/ a baby. That is not to mean that I don't have moments of terror for the course of my childs life- doesn't everyone? I actually never feel isolated (very supportive and not freaked out family) but I certainly do love that feeling of instant connection I feel when I hook up with other parents of children with DS. When someone asks me "How do I do it?" I look at them like they are crazy and have a very difficult time seeing my experience as different but I have a healthy child with a lovely personality that grows a bit more slowly than others in my view. I feel lucky and know that I am lucky in her health (knock on wood of course) since health is not a guarantee no matter what a persona condition at birth might be.
I have no criticism of your post - it is important that everyone's feelings get validated and it is certainly true for many. I wish that it didn't feel like an invalidation of Welcome to Holland experience since I think there is room for both as valid.
I love your blog and gift of expression! The beauty of blogging is that there isn't isolation, there is a wide range of experience and wisdom that we can share and I appreciate yours! Have a wonderful holidays! It certainly seems like you do a wonderful job as a parent!

marie clare said...

Just came upon your blog tonight via AI. I can relate to it so much, I was stuck at the airport so long and couldnt quite relate to the whole Welcome to holland thing for quite some time.
Ive been reading your blog all night, yur daughter is so similar to my son, and yep, no diagnosis here either.

Deirdre said...

This post has touched me so much and made me feel like I'm not alone! Thank you so much for sharing it and articulating so well what so many of us feel. My little one is almost 3 and we also don't have a diagnosis, so I can identify really well with all that you're saying in other parts of your blog as well. I would add to the Amsterdam airport that you wonder if you somehow made the reservation wrong - pressed a wrong key when entering your destination, were rude to the reservation clerk, etc.. I often wonder if there was something I did to cause this "detour" and it is so painful to go to that crazy place - I wonder if others do the same? This blog and your post and all these comments make me want to find a support group so much - it is so helpful to have a community out there who understands, b/c like you say you are surrounded by people who keep coming back from Italy, not really knowing what Holland is like!

Dana said...

I agree, there's no need to polarize . . . but the nature of emotions for many (not all) who find themselves unexpectedly having a child with special needs seems to often includes high moments of hopefulness and low, low moments of despair/panic/pain. I just wanted there to be something written that people could find and think "Even in those darkest times, I'm not alone---other people have been in the same place, and they have moved on to much happier times."

Padgett Mozingo said...

Thanks for sharing this and your story. Our genetics counselor shared Welcome to Holland with us but this is such a better explanation of the roller coaster I've ridden for the last 10 days.

Dinei said...

This was incredibly comforting for me to read during our son's 6 month, chaotic NICU stay. He was a 25 weeker with a number of complications and we're still waiting to see what long term effects his birth will have on him.

Thank you for showing me that I'm not alone in my struggle to accept what happened to us. I've shared your post with a preemie board, and linked here.

Dana said...

Padgett & Dinei-thanks for coming by, and I'm glad that you were able to connect with this. Thanks for sharing it, too.

Oliver's Hopeful Mommy said...

I just added it to my blog, it echoes my sentiments exactly. Thanks!

Anonymous said...

LOVE, love, love this...so true. And although people with "normal" children mean well, they just don't get it!

vickie47 said...

Thank you Dana for writing Amsterdam International. I loved reading Welcome to Holland and I loved your outlook even more.
Vickie

Blessed Momma said...

I don't love seeing my God's Holy name used in vain, but this is so much more a realistic description of life with special needs child in the beginning stages. I've never loved the Holland poem, especially since when it is presented to you there is almost this expectation from the giver that this silly poem makes everything peachy!
Thanks for sharing!

tinybitofheaven.blogspot.com/

Dana said...

Thanks for stopping by and leaving comments, new visitors :)

Blessed Momma (or anyone else that it applies to) if you would ever like to share the essay on your blog but are uncomfortable with the God-related phrase, feel free to ------- it out, if you note the edit. :)

caryanne said...

I found this post a while back and LOVED it! Just today, I sent the link on to a couple of friends with children with CP. And I also linked to it on my blog today.

http://aboutthesmallstuff.blogspot.com

Anonymous said...

Dana,
You are amazing and took the words right out of my heart. I found your post a few months back too and just now remembered again. It is exactly spot on. It sucks at the beginning (and maybe always will a little bit) and Holland, while lovely, breezed by the real despair. This is really what we need to hear at the beginning. Thanks for doing what you do. You are sooooo not alone.
Kathy

Kelley said...

I just wanted to let you know I had the occasion to share this to new parents of a baby with DS who are struggling right now. I felt absolutely confident sharing it after talking to them for a few minutes cause I could tell they were where I was last year (their baby born almost exactly a year after mine, same foreign hospital, same nationality as me, same gender baby).

And they really appreciated it.

So... GO YOU.

;)

Dana said...

Thanks, Caryanne, Kathy & Kelley (how alliterative)

It totally warms my heart to know that AI lets some folks feel connected and understood, and less alone. Thanks for sharing it, and for taking the time to comment, too.

EPKingsley@AOL.com said...

Hi, it's Emily. Not to sound defensive or anything - but the most important part of WTH to me is the acknowledgment of the pain part! When people ask if they can reprint it, I make them promise that they won't leave out the part about "the pain of that will never, ever, ever, ever go away! Because the loss of that dream is a very significant loss." It is hardly intended to sugar-coat the life-long, extremely challenging experience of raising a child with a disability - but rather to explain that when you do acknowledge the pain, you may be able to free yourself from the resentment and be able to access some of the more rewarding aspects of having this kind of child. Anyway, I never meant it to be perfect for everybody. I'm extremely gratified that it seems to have helped a lot of people and that is humbling and makes me happy.
EPK

EPKingsley@AOL.com said...

Hi, it's Emily. Not to sound defensive or anything - but the most important part of WTH to me is the acknowledgment of the pain part! When people ask if they can reprint it, I make them promise that they won't leave out the part about "the pain of that will never, ever, ever, ever go away! Because the loss of that dream is a very significant loss." It is hardly intended to sugar-coat the life-long, extremely challenging experience of raising a child with a disability - but rather to explain that when you do acknowledge the pain, you may be able to free yourself from the resentment and be able to access some of the more rewarding aspects of having this kind of child. Anyway, I never meant it to be perfect for everybody. I'm extremely gratified that it seems to have helped a lot of people and that is humbling and makes me happy.
EPK

Dana said...

Hi Emily,

First, I'm sending you an email . . . I tried to no avail to find an email address for you back in October! But let me also write a little response here to address one of your points:

"It is hardly intended to sugar-coat the life-long, extremely challenging experience of raising a child with a disability - but rather to explain that when you do acknowledge the pain, you may be able to free yourself from the resentment and be able to access some of the more rewarding aspects of having this kind of child."

I think that because I wrote this when I was very close to the raw, painful adjustment/grieving period (only a few months out) I needed more than a line or two to acknowledge the pain. (Also, brevity is not my strong point, so I never would have been able to squeeze my wordy emotional ramblings into less than a paragraph.)

I can certainly say that I wouldn't be able to write it again now, with a year's distance from my emotional rock-bottom . . . and as that time period fades into the distance, it becomes easier to leave behind Amsterdam International and appreciate the more peaceful and positive Welcome to Holland.

Welcome to Holland has certainly reached many (thousands? hundreds of thousands?) and given them comfort and hope. I hope that Amsterdam International continues to reach people who might to see that someone else has been in that darkest emotional place, and came through the other side with only minimal scarring.

Thank you for WTH, and for all of the amazing work that you have done to promote the inclusion and advancement of people with disabilities. And thank you for stopping by here and sharing your thoughts, I was humbled to see your name in my inbox.
-Dana

Jason and Shannon said...

I have no idea how to tell you how i managed to find this blog...I barely even read blogs but the few i do i guess in a round about way led me here??!!! So weird but so great. I don't blog but I'd love to share this on my FB page.

Dana said...

Jason & Shannon---If you haven't already, please feel free to share it :)

Liz said...

This is wonderful. Thank you.

Marcia said...

I found a link to your site from Syndromes without a Name on facebook. Your current article "Life, Undiagnosed" really reflects some of what we've been going through. Then I saw your link to Amsterdam International and had to check it out. I had just posted "Welcome to Holland" on my son's birthday (he's 10 now) as I always do. Now I have posted your article on Facebook as well. It is way more realistic. Thank you so much for putting it all down in words.

Paula said...

Thanks for putting into words what was in my heart. Thankfully, I left the airport a long time ago, but I still go back for a brief visit from time to time. I have shared a link to your blog on Facebook in the hopes that my special needs parents/friends can identify with it.

Anonymous said...

I had saved a copy of Welcome to Holland that I had been sent many years ago when I was struggling to find a diagnosis for my daughter, it is a lonely journey :( I have posted your blog to my website with pride:
http://kidswithfacialparalysis-moebiussyndrome.webs.com/

Thank you for allowing others to share your journey and incredible story. I will also share on my facebook page.

Shasta said...

Huh. Crazy. This seems so similar to my Land of Not OK post, but I guess in the context of your metaphor, I would say that we lost travelers still have to report back to the airport now and again. It's not like as soon as you leave the airport, you're fine and you discover Holland is great. I guess it's like you keep going back to the airport to see if you can find a plane home but there keeps not being one and slowly you realize you don't want to go home anymore.
Anyway, thanks for connecting with me and see you around Holland!
www.outrageousfortune.net

1978rebecca said...

Brilliant post. So very moving. I do not have children with special needs or diasability but have friends who do. This should be given to anyone involved so they understand what it's like.

Alicia said...

I would just like to say to those of you that never felt this way...bravo! Congratulations to you. For the rest of us who aren't so perfect and needed time to deal with our emotions, fears, anger, etc. than this piece may be for you. Whether you read it while your child is still in the NICU or when your child (like my son who has CP) is much older, you will find yourself in Dana's words, and just so you know, it's okay. It hit home for me and I appreciate that Dana allowed herself to be completely vulnerable and express herself in a way that others, including myself, can relate to.

I love your blog and look forward to what you have to share. Kudos!

Nicole said...

i've shared this on my facebook page. thank you so much for writing this. i felt like had written my story. the guilt can be unbelievable. thanks again

Anonymous said...

No words at the moment ...but just wanted to say that I'm posting this link to my Facebook wall. Judih

Dana said...

Thanks for the comments, and for sharing it. I love to see it traveling to new people, even now, a year later :)

Sophiaale said...

I am posting this to my Facebook page, I am in tears right now, both of sadness and hapiness, I am so glad I found you Dana, you are really inspiring, I think I want to blog too about my little girl who has a rare chromosomal disorder. Although I am still in the airport I am excited about Holland and growing to love it.
Thank you so much!

Joanne said...

I love it! 20 years later and I still get angry from time to time. Thanks for putting it into words!

Anonymous said...

You know what? I don't like Holland. Sure, there are moments of charm, but there is also too much dog s**t on the sidewalk, the Anne Frank house/museum is too painful to contemplate and all too often I'd rather just find a hash bar in Amsterdam so I can self-medicate my pain and disappointment. But I don't get to do that either because my kids need me. I grieve that I will never get to see Italy.

Nearly 6 years into this journey, I love my daughter (finally), but I just f***ing hate Holland. And yes, I know I sound bitter.

P said...

I've posted to Facebook Amsterdam Intl the second I found it last month and made it a note. I'm not sure the blog I linked to is yours too or not but I'll make the original reference to here too.

I never LOVED WTH, although I did enjoy it's intent and it's very helpful for many and I'm thrilled to see you two authors chatting here in the comments. I guess in some ways it was the never ever part I didn't like but I think I agree with Amsterdam Intl--maybe my issue is with it's brevity? And last minute addition perhaps--seems like an afterthought. BUT, the whole analogy is explaining the confusion and emotional turmoil & second guessing so a single more blunt point at the end should be a good addition.

I ADORE and love love love Amsterdam Intl and it helps me understand my own inability to FIND the 'right' words for explaining my thoughts and emotions. Years into my new situation (DS, very healthy DS) I still struggle to effectively communicate with family & friends most of which are not local to us.

I especially adore and enjoy the part about your spouse and the opposite reactions and timing of passions related to the conditions you face. It's rare that people address and discuss this aspect and I LOVE it every time as we sort through our own perspectives.

Thank you thank you and thank you and I send this to new parents always!! I'll send this original link from now on!

Nicole said...

Dana, I found this to be the most open and honest response about how parents grieve after they find out their child has a disability. I am the moderator for the Canadian support chat page for Unique, and I have shared this with both the Canadian forum as well as shared it on the international site. Your insight and honesty has helped so many families and offers them words to put to their emotions they are feeling. I also shared this with a bunch of educators at our local school so that they can understand what the parents of the children they are serving maybe going thru...and their was not a dry eye in the house. I heart felt thank-you

Zhanna said...

This is one of the best blog posts I've ever read. I love your blog, Dana. Thank you!

Sarah said...

This is the best special needs blog post I have ever read - having a special needs child and being a health care provide - I loved welcome to holland prior to having a special needs child - then I resented it, hated it, and wanted to shove it down the throats of all the good intending health care therapists that handed it to me - this sums it up and thank you! You're so witty as well!

Dana said...

Thanks to the commenters of 2012 :) It's great to see it making the rounds on FB (still) and reaching new people near the start of their journey, when the airport still seems so big and inconquerable.

Apartment rentals in Amsterdam said...

unbelievably true and honest. hope this reaches out to everybody. thanks for this great share!

Kathy said...

i JUST HAD TO POST THIS ON MY fb TODAY - GOD I WISH I HAD SEEN THIS WHEN EVERYONE WAS HANDING ME THE HOLLAND POEM - YOU NAILED IT PERFECTLY FOR ME!

Anonymous said...

well I may be one of the few but I love Holland. I never was depressed over the fact that my son is disabled. When told there was something wrong with him I immediately accepted it and just concentrated on being the best mom to him that I could be. Do I wish he was typical, of course I do, but he is not, never will be and I go on. I find life with him to be beautiful. Yes, it is challanging, exhausting, lonely but it is also loving, rewarding, and beautiful. I have been a special mom for 24 years now so, have been thru it all. He has taught me many leassons I would not have learned if he were typical. So, for me Holland is a perfect fit and I am enjoying my stay.

Lennie said...

I saw this on facebook. I just shared it with a friend who just started her own blog about her families adventures. Love it!

P said...

Posted link on comment section of Facebook in a DS medical communities group!! Thanks always & I hope this continues to reach & move it's intended recipients for many moons to come. I see a link in a www.downsyndromepregnancy.com Blog from 6/11 too--perfect. Put it in the discussion boards regularly too!! Thanks again & again

Serendipity said...

I just loved reading this one! It's so honest and I can relate to it everybit! Though I like Welcome to Holland, I still sometimes find myself wanting to go to Italy and not be in Holland. I agree those days and times have gotten way shorter over the time. But it is still there.

Lisa said...

Thank you for understanding, it feels like noone does sometimes

Corinne said...

I found your blog from the Parent's Mag blog list and was curious about what you had to say....just read your post on AI with tears streaming down my face. Shared with my husband and had a great "talk" about how we are feeling dealing with a special needs son. Thank you for your honesty and for putting words out there that I didn't even know how to express.

Corinne said...

Thank you for posting. I hate that stupid poem. It's amazing to me how many people refer me to it immediately like it is some "great" writing. It's not. This is. Thank you.

Corinne, Fairport, NY

Erika said...

Dana, I love your blog. Just discovered it through the speech app petition--which I signed--good luck. LOVED the video of Maya and you reading.

I love this piece because it's witty and fierce and appreciates the emotional complexity of loving a child who is both perfect and challenged. Sam is 8 now and we're only back at the airport now and then, but it's a great analogy for how that first year or so felt.

One thought I had: when I first moved to Holland I sought out an ex-pat community and we sat around eating imported (and so expensive!) American or Italian snacks and confessing to each other with glee and guilty relief how strange and stressful we found Holland, how much we missed where we came from or where we thought we were going.

And then one day one of my friends emailed from Italy asking, "Hey, have you ever met any adults who grew up in Holland and talked to them? That might be interesting." Wow! Embarrassingly, that had not occurred to me!

So I began to take a few excursions out to meet the native population of Holland--those who had been born there, or were so small at the airport that they had no memory of it. Some of them were adults now, and they offered me such interesting and helpful and reassuring perspectives about what living in Holland might be like for my son and who he might grow up to be.

One of my favorite gentle spoofs of WTH is here, for example: http://autisticbfh.blogspot.com/2007/07/welcome-to-italy.html

I still hang out with my ex-pat buddies sometimes, but it was an interesting and important move for me to meet the adult locals, too.

Thanks so much for your great blog! I'll be back frequently. And just so you know who I am, my only internet presence is through my husband Todd Drezner, who made a film about autism politics and acceptance: www.lovinglamppostsmovie.com.

Thank you!

natasha said...

Dana I like your take on this.
Mostly I am fine in Holland but sometimes even here I seem to be on a different planet with my son's extra special take on life.

Also wanted to support you and Maya and the others in your lawsuit .

Samantha Lemons said...

Posted this in a group on Facebook, Hypotonia Parents Connection, for one of the moms. Love it!

Carrie Connor said...

Hi... I am an ECI teacher and for years have given out the Welcome to Holland story... This year I went in search of something new to share and found a link to your blog on Pinterest. I really like what you have to say and the tone in which you convey it... I am trying to figure out a way to share both with my parents at conferences next week!

Anonymous said...

Wonderful poem. I have left the airport and am going to a whole new country. My son has just gone off to a residential college which we all love so much and for 36 weeks of the year I am now me and us again. But boy do I love all the extra weeks when he comes back to our country to visit. I am at a stage where I love this country. Only took 18 years lol

Sandcastles and Snowflakes said...

Wanted to let you know I am borrowing this! Very well said! Thank you!

Kim P. said...

I'm a special education teacher, and I often share "Welcome to Holland" with parents... This will become a piece that I share with parents as well. Thank you SO MUCH!

Lucie Knight said...

I read this post when you first wrote it, and cried. I was linking back to it for someone and re-read it. I was diagnosed with Lupus after a year of unbelievable agony and I realized that you captured exactly how I feel.

Thank you-the emotions you write about are universal and apply equally to adults facing a life long chronic painful illness-thank you again

Lucie

CMills said...

I think I love you. I have been reading your blog for the past I dunno couple of hours and I swear you are inside my head. i don't care how creepy I sound. Thank You! Love,
A Mom of a son who for a year had undiagnosed developmental delays and more recently has the diagnosis of Angelmans Syndrome.

Anonymous said...

I'm sobbing hard as I'm reading this. Not sure whether this post is still active. I'm currently still very much stuck at the airport. My precious 3 yo daughter is diagnosed with autism a couple of months back. From a stage of lost to one with info overload to put her on occupational therapy, ABA etc... Ive sort of reached the burned out stage now. Seeing how my child was rejected by other kids breaks my Heart into a million pieces. I am deeply saddened

Shelley West said...

A family member suggested I read "Welcome to Holland." While I understand its simplicity, I'm not in a place to relate to it yet. It made me feel guilty for not noticing the windmills and tulips yet. My Holland can be "filthy and disgusting"...with poop paintings, and urine trenches. I have an autistic 4year old. I have an unfinished home in Holland and I'm making frequent visits to the airport.

Monika said...

Hi Dana!

This is written beautifully and had me in tears! Thank you for sharing! I also posted this on my facebook for my friends to see!

Thank you!
Monika

Anonymous said...

Hi thanks for writing this, it sums it up much better than the original, apart the bit about not wanting to buy the ticket.
I don't like the original at all.
What you left out is that some kids in holland are in pain, some have loads of operations, some hit and kick their parents, some can't talk, some get bullied or ignored, etc. Also kids aren't bothered about rembrants and tulips, they just want to go to Disney world.
Also in holland you have to fight for everything for what your child deserves and it's a never ending battle with the nhs and education department.

Mum2twopreciousgifts said...

I have just seen this on the FB page of a friend. My daughter is one of two in the world with an uber-rare chromosome deletion. I can so, so, relate to this post. Thank you for putting what we special parents have all been through, and continue to go through, into words.

Michelle from Australia

Anonymous said...

Just again shared this profound post that is a permanent part of my Facebook notes area. A mom noted she was needing another new post from a blog that found her with divine timing & it was preaching to her and I immediately thought of you & Amsterdam intl. The section of the analogy about spouses remains clearly unparalleled still. I enjoy the comments here too especially the one about finding connections & meeting siblings & those people diagnosed with the disease.

Hugs to the mom who has a child at that time newly diagnosed with Angelmans. Find your support network, a mom I know recently joined an amazing retreat exploring an inclusion school in Canada that could be a model here in the states--along with other amazing schools here!

Peace and strength to you and all of us!! May we share and educate bravely every day step by step and heal & save souls.

Colette said...

Hi Dana, I have posted this on my Facebook page. It describes my feelings exactly. Ive often felt as though i was grieving for the child I was supposed to have. I often think this just wasnt the plan. I have far more Good times than bad now, but I know it will always be with me. Today is a good day :)Thanks for sharing xx

Ruth Burton said...

Hi, l love the poem about Holland and it always makes me cry, my daughter and son in law have both visited Holland twice and allthough thier life there as been a very hard, sometimes difficult and emotional life there, it as also been beautiful, challaging, rewarding, and although Holland wasnt the place they or us really would of chose to be, it's a fabulous place with lots of rewards, of course there's plenty of sad and emotional times, times when you think you can't do this anymore, times when you can no longer cope but we are a close family that help one another though it all, and then there are the good happy fun times, family times, rewarding times, times when you think, oh I do love my family just the way it is, time when you think Holland is the most beautiful, fun loving, and exciting place to be and no matter what we would not change a single thing about Holland we have two very special loving wonderful memorable visits to Holland, and we love them with all our heart and soul xxxxxx xxxxxx xxxxxx xxxxxx xxxxxx xxxxxx

Anonymous said...

My son will be seven this year. He brings so much joy to our lives, but he needs a great deal of care. I often think of Ethan as a seven year old toddler. As he grows, I wonder what life will be like with a toddler who is taller and stronger than me. I have a lot of fear when I think about our future. Thankfully, however, I no longer mourn the child I thought I would have. Those days were so painful. Your essay is extremely well written and certainly makes me feel a little less alone.

Rebecca WYLLIE said...

Thank-you for putting it all into words. I have posted the link on my Facebook page and will be bookmarking your blog. It's such a boost to know that others are fighting the same battles.

Rebecca

Keith Markham said...

Just read you piece when doing research for my own blog http://22qwhatsthat.blogspot.co.uk/2014/05/the-finishing-line.html

Think it is a great analogy of how we come to terms with having a child with special needs

Rajvinder Hemus said...

Posted on the 22qAwarenessDays FB Page. Wonderfully written. Thank you.

naomi epstein - editor said...

I'm a teacher of EFL to deaf children, NOT in the US, and have just learned of the original Amsterdam piece, which led me to your post.
Your writing is powerful and spot on, and I wish you all the very best.
I have linked to your post on my blog and liked your facebook page.
http://visualisingideas.edublogs.org/2014/06/21/from-welcome-to-holland-to-amsterdam-int/
Yours,
Naomi

Andi said...

You articulated our struggle so well, thank you for sharing.

Anonymous said...

For some of us we were granted a rare second chance to go to Italy. Let me tell you -- without Holland -you can NEVER appreciate Italy. Italy is beautiful, Italy is easy. It's a completely different life but even when we are in Italy we are always reminded about Holland. Our kids who are in Italy are NOT regular Italian citizens. No, they live there but they visit Holland with their siblings every day. These visits are usually never-ending waiting at endless therapies, doctor's offices, hospitals' visits. Our Italian citizens are exposed from birth to a different culture, different climate and they learn how different we all are, how unique, how fragile. They grow up accepting and embracing the differences, often protecting our Holland citizens, cheering for every little victory no matter how insignificant in Italian world.

I can never stay in Italy. I'm always reminded that I'm just a visitor there. My heart, my soul, my life is in Holland. Italy is a wonderful dream. It's perfect and it's exactly what I've always wanted and hoped for. But it's not my homeland. Holland is what made me --ME. It's Holland that formed me and made me strong. It's Holland that taught me the value of life. I used to HATE Holland. But now I'm wiser and I embrace Holland. I never wanted to end up here in Holland but now I can never leave. It's part of me, part of who I am and no matter where I am, I will always carry Holland in my heart!

Vic at Blossom and Snowflakes said...

Thank you for writing this. I went to Italy first and expected to go again... I love Holland as much as Italy but it sure is hard work! I just linked on my blog: http://blossomandsnowflakes.blogspot.co.uk/2014/09/raising-child-with-disability.html

Susan said...

Hi there Dana. Thanks for writing this and giving permission to post it. I've linked to it on a page on my blog and wanted to let you know. http://ainsleyrae.blogspot.com/p/special-needs.html I just want to encourage all those parents who I see are stuck at the airport to leave it as soon as possible. I know it's a waste because I was stuck there myself for quite awhile.

Anonymous said...

Thank you so much for sharing this. It is so true, I guess we all loads in common. I'm in tears right now.