Little's Life

Little's Life

Tuesday, June 5, 2012

Bring Your Passport

Every special needs family has read this essay a dozen times, so this is more for those of you who have regular needs children or no children at all.


Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved  (so....I'm probably breaking some copyright law it still wrong if I acknowledge the writer?)  

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland

I appreciate that essay, as it gives you a new way to look at life with a special needs tot.  It shows you that we are not always sad, depressed, angry, or bitter about our unexpected way of life.  There is beauty in having a child with challenges.  I find more appreciation and joy in moments that you who have a normally developing child take for granted.  In a way, I believe that I have more small moments of joy and excitement in my everyday than you do.  Do you squeal in delight each time your 2.5 year old gets a spoonful of cereal to his mouth without dumping it on his lap?  I do.  Did you jump up and grab him and cover him in smooches this morning because he bent over and picked up a toy car from the ground without holding anything for balance?  I did.  Did you praise him for picking a flower in the yard this afternoon because it meant he willingly touched the grass with his bare hands?  I did.  Granted, there is an ever present hollowness looming in the back of my mind that can take over at any moment and bring me to tears knowing what I do about this disease, but mostly my days are filled with Little's tiny miracles and for that, I know I am blessed.

There is a blogger out there in CyberLand named Dana.  She has the most precious 4 yr old daughter named Maya.  Dana knows very well what it is like to land in Holland, as sweet Maya has her own set of obstacles.  Dana wrote about the essay above and I feel she is right on target with how I feel   With her permission, here is Dana's post entitled Amsterdam International

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
If you'd like to read more from Dana, you can find her blog at Uncommon Sense or by clicking my Amsterdam badge on the right hand side of this blog.

I know I sure have been changed for the better.  I am more compassionate and more empathetic (ok, so basically I am saying a big ole crybaby now), especially towards children  And I wasn't a big fan of them before (unless their names were Xavier or Isabella).  I can't say all of that comes from DMD - I am sure some of it just came with motherhood, bc I fell in love with some Bulltots before Little was diagnosed.  I still have my guard up and don't particularly care for strangers, but I certainly have a softer heart now.  I gave the people in front of me in Wal-Mart $2.00 to cover the amount they were short at the register this past weekend instead of just sighing loudly and scowling - so that's progress.  

Well now I feel like I have to elaborate - by strangers, I don't mean people whose names I don't know.  I mean actual strangers.  People who I've never seen before and probably won't ever see again and have no interest in chatting with.  Those people at Wal-Mart, for example.  The other folks in the pharmacy waiting area.  The person at the next pump at the gas station.  I just kind of slip into this "I'm here for one reason and that reason is not to make friends with you" trance.  It's awful, I know.  But like I said, I think I'm getting a little better.  Or at least I am aware of it and am acknowledging that it's not my best quality. 

I am certainly less judgmental of families that hop into my line of vision.  I no longer assume that the parent with the screaming toddler at Target must be a neglectful mother, I think "Man, I hope that child doesn't have a sensory processing disorder".  I don't see a child with bruises on his legs and think they are abused, I think "Man, I hope that child doesn't have mobility problems like Little".  I don't see a mother carrying a 4 or 5 year old and think she needs to stop babying her, I think "Man, I hope that child can walk/see/hear/isn't too weak from chemo to walk on her own".  Special needs tots are all around you, people.  You can't always tell at first glance.  Take me and Little - if I am holding him, you'd have no idea that he toddles around like a Weeble Wobble, always on the brink of crashing to the floor - that I am holding him out of fear of his breaking a tooth on the cement floor if and when his legs give out.  If you hear him speaking, you assume he's perfectly healthy - maybe even gifted - you'd never be able to tell he has a progressive disorder ravaging him internally.  Take my friend Rosie.  She has two absolutely gorgeous little boys with the best heads of hair you'll ever see.  If you were to see her out at the store and one of the boys had a total meltdown, you'd have no way of knowing that he has autism and wasn't just in need of a nap, but was just frustrated that he couldn't communicate what he wanted Rosie to know.  "But he doesn't look sick!" doesn't mean anything.  Before I landed in Holland, I was completely ignorant to just how common the "uncommon" child is.

I know I am blessed to be Andrew's mother.  He is the single most amazing thing in my life.  He brings me more happiness than any other man in my life (sorry Mister, lol) but also more frustration.  Mister and I may have unexpectedly landed in Holland, but we're certainly enjoying the view.

Today's featured Little's League members:

They attended a family reunion in Kansas that we 3 Ps didn't make it to (next year!) and took this picture to surprise us with..  I have the best family.  Sorry ya'll, I win.

Man in the tree shadow is my dad, sitting on top of the wagon is my cousin Doug, then his mom/my aunt Donna, my cousin  Laura, and my mom.  Sitting on the bottom row is my Uncle Steve, his daughter Katie, and my aunt Joan.  The guy inside the wagon is my newest cousin Matt (he and Katie just got married).


  1. Thanks for posting this, Katherine. My stay at Holland International Airport was blessedly short, but my heart goes out to other families whose children can't be so easily healed as Alaina was.
    God has a plan for you, Sam and Little -- look at how many people you guys have already touched. You guys are always in my prayers.

  2. Katherine I LOVE your optimistic spirit about this, he is so very blessed to have you in his life and I inspire to take this journey they way you have, with love and hope. Our boys will be SO loved and live a happy fulfilling life.