When you get a child that wasn’t quite what you were expecting, there are many standard sayings and meme’s and poems etc that you will suddenly find all over your Facebook feed. One that I am sure almost all parents in a similar situation to myself is familiar with, is Welcome to Holland by Emily Perl Kingsley.
In the early days of Alices diagnosis it was forwarded on to me by a Mum who had walked this boggy path for almost 20 years. At the time it was a comfort to me, a small one admittedly, but you take what you can get in those dark days. But as the years rolled on I have come to hate this fucking poem. I still see it regularly forwarded onto lost and confused parents of a whole host of not quite “normal” kids and I always see how it helps people and they proclaim “oh yes that’s so us, we are just in Holland”. Well for the most part we weren't in Holland, we were in Hell.
For those who don’t know, Emily Perl Kingsley was a writer on Sesame Street and had a son with Downs Syndrome and she wrote Welcome to Holland as a way of making sense of her unexpected role as a special needs parent. She was responsible for bringing disabled characters to Sesame Street and has done many many wonderful things. However, I am guessing from the gist of the poem and from what I can find on the internet, that her son is relatively high functioning, that he never tried to kill her with his bare hands or chew the skin of his own arms because he wasn’t allowed to eat dirt. I doubt he smashed his head on the floor for no apparent reason whatsoever, or threw poo, shoved his fingers up his bumhole, headbutted her or sunk his teeth in her legs like a mistreated pitbull. I suspect he didnt throw non stop tantrums every day (and most nights) for four years straight. But of course I could be wrong.
I am assuming this though, because if he had done all those things, I can assure you she wouldn’t have written Welcome to bloody Holland. What she would have written would be a touch more like my version.
Below is the original, which I suggest you read first. If you are lucky enough to have the type of child with a disability that means it’s a happy little bunny despite all it contends with, then the poem really will be for you. However if you got the shittier end of the stick, the really low down and dirty end of disability, then my version may just tweak your nipples a little harder than the original “Vanilla” one does.
Welcome to Holland
By Emily Perl Kingsley
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.
Welcome to The Arse End of Shitsville
By Charlotte Underwood
People rarely ask me how it is to raise a child with a mental and physical disability, because lets be honest, most people are just thanking their lucky stars its not them. But should anyone ever actually want to spend some time mulling over how they were fortunate enough to have dodged this type of bullet, I like to think of it like this……
When you are going to have a baby its like planning a fabulous all inclusive holiday to the Caribbean. There will be endless food and wine, soft white sand and calm crystal seas. You and your love will of course be in peak physical condition and you wont gain so much as a pound in weight when you are there. Everything will be clean and smell nice, the locals will all speak your language and the staff will bend over backwards at your every whim.
The day comes and your flight arrives. You and your masculine soul mate skip onto the plane full of naïve stupidity and anticipation of this carefree trip. “We are so in love” you think, “nothing could dampen our smug loved up spirit”.
Several hours into the journey the flight attendant comes over the tannoy and says “Don’t panic but the pilot has died from a sudden heart attack and the co pilot has a nasty case of gastro after eating the fish mornay. Please assume the crash position, we are taking this baby down. Good luck”.
With that the oxygen masks fall but they don’t work, you buckle your seatbelt but that too wont lock. You look to your husband for support but he has thrown up in fear and is just as shit scared as you are. All around you is fucking chaos and you start to shake and cry but no sound comes out. Don’t ask me why no sound comes out, but I can tell you it doesn’t. Maybe its because you are in a vacuum.
The plane then crashes onto a remote island and everyone from your old life that was on the plane with you is nowhere to be seen. Some have bailed out as they couldn’t see this through to the end, some just got scattered in the impact and others you don’t care about their whereabouts as they were dicks and made utterly stupid fucking comments on the way down, so its a good excuse not to look for them!
Through bloodied eyes you see a sign on the beach that says “Welcome To The Arse End Of Shitsville”.
After the numbness and shell shock and disbelief that all this has happened in the blink of an eye wears off you realise a few things:
1/ In Shitsville you are 100% on your fucking own. No one speaks your language or cares what you have to say. They think you should have died from the impact and its actually rather inconvenient that you didn’t. So instead they just keep reminding you that you should be dead and wait for you to do so. If you question the fact that you are alive so maybe we could do some things to make the best of this situation ( you have to spell this out and say it very slowly as they simply don’t speak your language) they think you are in denial and that all plane crashes are fatal so you need to get used to it.
2/ In Shitsville everyone screams and crys and shouts and hits out and throws poo and is in pain all day. The residents bite themselves and wail with stomach and head pain to the point that you end up screaming yourself. But because no one speaks your language they cant tell you whats wrong so you cant help and if you try to help you get headbutted or kicked in the face. They all wear very heavy orthopedic shoes for some reason. No one else seems to give a crap about this except you and your husband, so you just deal with it as best you can.
3/ In Shitsville no one sleeps for more than 2 hours at a time. EVER!!!!!
4/ Shitsville is a pretty fucking ugly place. There is nothing nice to look at and no pretty scenery. There is no hope, no silver linings and no “joy”. You hear about it from the residents up the hill in The Sunny End of Shitsville but you never see it down here in The Arse End. If you do dare to look around, there are no guide books or maps whatsoever so you have to navigate everything for yourself. Which wouldn’t be so bad but you have to do this on no sleep and after being screamed at all day everyday, you are nursing head butts and arm bites and disapproving looks and you and your husband just want to split up and leave but you cant.
5/ Everyone is Shitsville is always covered in some sort of bodily fluid at all times. Often several at once. They vomit every time they eat, they even vomit when they haven’t eaten! They take huge amounts of drugs everyday that cause stomach ache and make them puke even more but the resident Witch Doctor says they must do it, so they do. If you question the Witch Doctor you are a trouble maker so you keep your thoughts to yourself. Everyone in this part of Shitsville has a permanently dodgy tummy so they are either bunged up and in agony or joyfully relieved but covered from head to toe in runny shit. If its not that its snot and wee, but its always something. They cant clean this up themselves so this job falls on you.
6/ In Shitsville everyone keeps secrets. Secretly your husband blames you for all this because the trip was your idea. Secretly you know this and don’t care what he thinks as you are in this together. Secretly he wants to build a raft and get as far away as he can and leave you looking after the hostile residents of Shitsville alone. Secretly you wish you could do that too but women don’t run so you stay. Secretly (very very secretly) you start to think you can make this work even if it kills you and you may just build the damn raft for your husband yourself.
After about 5 years in the slums of Shitsville its apparent the plane crash hasn’t killed you and you arnt going to get rescued any time soon so you have built some strategies. In this time you have learnt to pre empt, the violence, pain and poo of the locals and find ways to manage the situation. You have formed a rudimentary language with sounds and hand signals and very occasionally you think that maybe they do like you and that they are just very misunderstood. You have found the balls to stand up to the Witch Doctors and have convinced the residents to stop taking so many drugs. They are much nicer and happier for it but you are not popular with the Witch Doctors. This is something you do not give two fucks about. You learn how to heal them with food and alternative therapies. Soon they attack you less, stop biting you, stop attacking each other and learn to hug you and sign “I love you”.
Occasionally you venture up to The Sunny Side of Shitsville. Oh my god what an awesome place that is. Its still Shitsville and not the Carribean but there people are different and happy, they are just getting on with things. They arnt in agony or mental turmoil, they arnt dying and suffering day in day out. With each passing year you go there more and more often, but you know you are still a resident of The Arse End and just getting out now and again is enough. Then one day you and your husband who are now only really together as you have no other choice in the matter, suddenly realise that the locals are ok for a few hours so maybe you could go to the top of a big hill and look out at the view for once.
You take each others hand and walk as fast as you can on years with no sleep and stress levels high enough to kill a Buddhist Monk. You only have an hour or two before the locals start trying to eat their shoes or begin pushing dishwasher tablets up their noses so you move fast. Then you see it…….blue sky, a horizon, a few birds, sun on your shoulders, light on the water. Its so beautiful and incredible and amazing and sure you would have had this everyday in the Carribean but you wouldn’t have “seen” it or “felt” it. I bet those fuckers in the Carribean haven’t got a sodding clue how beautiful this is.
You and your husband realise you don’t hate each other after all, you just hate The Arse End of Shitsville. So you hug and agree that you will keep doing what you are doing and slowly make the move to The Sunny Side. Then when you are in The Sunny Side you will do whatever it takes to get to the top of this hill whenever you can. But you realise that you have this, that you can do this and that is not about enjoying The Arse End, its about clawing your damn way out!
With the wind in your hair and the sun on your face, you skip back down the hill full of naïve stupidity and anticipation at the trip ahead to find the locals in full riot. All shoes have been eaten, noses foam with dishwasher tablets, everyone has shit themselves or vomited, and they all hate you because you left them for 90 minutes. As punishment they keep you awake for a week.
