Saturday, June 21, 2008

Welcome to Holland

The following story was given to give me by a friend, and really reflects exactly what Nate and I have been through the past 6 months. Nate and I are strong, but we've definitely had our ups and downs, and felt a whole array of emotions, from devastation to anger to sadness to guilt. It started when Lucas arrived 4 1/2 weeks early with no warning. What did I do wrong, I thought constantly for months. Is he deaf because he came early? Prematurity is certainly a risk factor for hearing loss, he just misses all the criteria though. So that's probably not the cause, but it hasn't been completely ruled out. February was a tough month. It got to the point where Nate would do ANYTHING to make me smile. Nate took it hard too, he just dealt with it differently.

Please don't misunderstand me, I would not trade Lucas in for the whole, wide world! He means everything to us! We would love him just the same, hearing or not. His hearing loss has just thrown us for a loop. We had always dreamed of raising bilingual, or maybe even trilingual children, always wondering why people who had the ability to do so never took advantage of it. Lucas may still some day learn Spanish and/or German, but it's no longer a priority. We even gave him an international name so that we could travel to German and Spanish speaking countries and have them pronounce it with ease! That's how much we thought about it. That's how important it was to us.

We truly rejoice in his life! He is such a joyful little boy and we can't imagine life without him! God obviously has a special plan for us, and a special plan for him, even if I have a lot of trouble remembering that on a daily basis. He will be okay, and he will live a fulfilling life. The next few years will be trying though. We're doing the very best that we can possibly do for him, and nothing less.

Next time you meet someone with a special needs child, no matter what the circumstance is, don't tell them that it could always be worse. It's just not your place to make that determination, even if it is true. You stand there with your perfect child, who has reached all of his or her milestones on time, has never spent a day at the doctor other than for a well-baby visit, nor a minute in the hospital other than at birth, and you don't even know what a specialist is. You try to make that person feel better by telling them their situation is not that bad, but you really have NO clue what it's like. Welcome to Holland.

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 Colosseum. 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.


Brendan and Sandy Garrett said...

I love your thoughts on this. The expression I hate the most is "God would never give you more than you can handle." I absolutely hate that. I always wanted to say, you know, I think God was wrong this time! Seven years and countless appointments, therapies, and specialists later, I still get overwhelmed by it. I still have days when I can't handle it- I have weeks that I can't handle it! I was unbelievably depressed after my daughter was born. When I least expect it, things still make me cry- on a semi-regular basis. It isn't something that you EVER get over. You always want Italy- at least, I always want Italy. But, I've just learned enough Dutch to get by.

Christian's Mommy said...

This little story got me through our first couple of months of Christian's diagnosis. I can honestly tell you, after being in Holland for almost 17 months, it's beautiful. There will come a day where you can't imagine being anywhere else.

Hang in there.

tammy said...

I love this story too ... I think about it often as it has helped me through my first few mths so far!

I agree with the Garrett's too - before Aiden's birth, I had just taken my dad through a 2 yr dementia battle, walking hand in hand with him until his death in Jan. People used to say "God would never give you more than you an handle" ALL THE TIME! Then 2 mths later Aiden was born profoundly deaf and people would still say that along with "it could be worse" and I wanted to scream "YOU HAVE NO CLUE!" But I think it's a situation where they don't know what to say and really all I ever wanted to hear was "wow, that really sucks", because it does.

If Holland is where we're meant to be, than we'll make the best of it. We still have a lot of territory to cover/learn, but with all the great tour guides we're on our way, and so far, we like what we see!

My thoughts are with you!

Brendan and Sandy Garrett said...

I think some of it comes down to the view from the window you happen to be looking through at any given moment whether you still yearn for Italy or not. My child isn't deaf; she has severe mental retardation and CP. Sometimes it's impossible to not want Italy. For example, at 1 we were told that she wouldn't walk; at 2 that she wouldn't talk; at 3 that she won't ever be able to be independent; at 4 that she won't ever potty train; at 5, that she can't be in a typical classroom; at 6 that we should start to think about group homes, or when you walk in at 7 and she's smeared her feces all over the room and herself- Holland isn't always a pretty place to be. Some of us may have to look a little harder to find the beauty. But,it's there. It is ABSOLUTELY there. It just may get temporarily obscured by clouds. The most important thing is, no matter what your view, you must always keep looking for the beauty. And when you're ready to see it, it will be there. And it will be the greatest view you could ever imagine!

Jennifer said...

Hey Jenny,
That's a gorgeous little boy you have there. And a great choice in name. It's amazing how much time has blown by since we knew each other in Marburg...Holy Cow...6 1/2 or 7 years ago now. Hard to believe that much time has already passed. Congratulations on the addition of the new little one! He truly is a beautiful baby! I love the picture that you have on the first page of the blog.
I suppose that a post isn't really the best place to catch up. But I did want to write and congratulate you. ~ I do have a blog, though it's not really functional, but you should be able to see my profile with no problems. If you have the time to catch up, I'm sure we'll find a way.
Congratulations again! Take good care of that wonderful little one!

Jen Sudnik (now Jen Nicolas)