Sunday, November 6, 2011

Shareworthy Sunday

The submission below comes from the mommy of one of our heroes, 22-year old Malcom :) who YES is living with hydranencephaly. *not what you would expect to hear in the same sentence with that diagnosis, considering the prognosis is death in the first year... that's why he's our hero, though they're all our heroes but he's our oldest!

Before I share Jennifer's post, I want to share the ever-so-famous "Welcome to Holland" that most special needs families have read many times. I do not want to assume that you know the story, so just to be sure:

c1987 by Emily Perl Kingsley. All rights reserved

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.

And now, our share-worthy post from bee-mommy Jennifer:

Trip to Holland? Not us.
a little 'musing' by Jennifer Armerding

Hey! You are having a baby! Sure enough, you are told by the doctors that you have a baby, but apparently the baby is Dutch, rather than Italian, which is what you were expecting. (Let's make the silly assumption that nationality brings with it different care needs!) Woah! Now you need to learn to care for a Dutch baby. New lingo, new physical care, etc. But. you are IN Italy. Your friends are still Italian. Your grocery store is still Italian. Your church is still Italian. And most of them haven't met anybody Dutch before. They are intrigued by your child. 

However, Dutch babies are pretty adorable, in general, like any other baby. 

You also find that there are a league of professional people swarming around whose entire job is to help your baby adapt to become more Italian as he grows. You meet other families who ended up with Dutch babies and live in Italy. You all hold out hope that your babies will become more Italian as time goes on. As your baby grows, you read magazine articles and see television features about babies 'just like yours' who beat the odds and became Italian! Yours doesn't.

He isn't a baby anymore, and the former swarm of professionals becomes a few here and there. People aren't saying it, but you get the feeling they don't think there is much chance he will gain too many Italian skills as time goes on. He is slower, can't seem to learn the language, looks different, etc. Ok, you tell yourself! Dutch is good! This kid is the greatest! People from Italy and Holland can coexist! We will call it inclusion! 

Then you learn that inclusion means that the Dutch kids have to be able to do what the Italian kids are doing or they are deemed 'inappropriate'. Some of your friends' Dutch kids manage to do this. Some of them don't. Apparently they belong with other Dutch kids in a separate place. Italian kids will visit them from time to time, maybe reading to them or playing games, and then they will leave. Other kids have 'friends'. Your kid has 'helpers'. The Italian kids might even earn points and rewards for volunteering to do this!

Your child is now not a 'little kid' anymore. You and he walk down the street in your wooden shoes and realize all of a sudden that everyone rushing past you is wearing the latest styles; leather, silk, designer clothes. They are talking madly on their cell phones. They are laughing and drinking their espressos in sidewalk cafes. They are speaking Italian, which you used to know. In fact you were fluent. Now you wonder what happened. Dutch is now your language. The Italian seems.. foreign somehow. When did YOU become Dutch? 

Well, the hard part is that, far from being an adorable baby, your child is now a challenge for Italian people to accept. Unless they know other Dutch children or have known you for a while, it is hard for them to know what to say to you, how to treat your child. If they invited your child to a birthday party, for example, what would they do with him? They only speak Italian. The games will all be ones Italian kids play. So they don't invite him. 

The Italians are big hearted, warm people, in general, but still, you are a foreigner. Other kids stare and sometimes even worry that they might become Dutch if they get too close. So they don't. You stand in a crowded hall with your wonderful, sweet child with a 10-foot parameter of empty space around you, and that is when it hits you.

We are not in Holland. We are never going to Holland. This is it.

Jennifer Armerding and her two adopted sons. She is in the process of also adopting a daughter. 


  1. P.S. from Jennifer - I wrote this a long time ago in a period of life where I was struggling to adapt from the small child phase to the big kid phase and feeling kinda lonely, even though I wouldn't have traded my child for the world. That phase passed, but I thought that sharing this article might help out other families finding themselves in that interim 'nowhere land'. I DID adopt that daughter, and my sweet girl is turning 11 this month. Right now she's off at her first grown up concert with a dear friend from church. I have two other little ones since then, also, so 5 in total. I would encourage you, my friends, that the blessings and overwhelming sense of awe at God's provision far outweigh the struggles. Thank you, Ali, for being kind enough to post this. HUGS.

  2. Thanks Jenny for being there for my Malcolm. When he was born they told me he wouldn't live past the age of TWO (he's now TWENTY-TWO), we lived in Texas then and I moved us all to Washington where we met you, a GODSEND. We decided to move back to Texas but couldn't bring myself to bring Malcolm back to the state that said those horrible words....I wanted him to have a better life, to live longer and he has in Washington, with you and what you offer him. My mom gets to visit him EVERY year and she is sad and there are people that are angry or show discernment in my decision but I thank GOD for putting you in our path. I thank you and I love you Jenny. Thank you!(sally-birthmom)


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