Welcome to Holland

Why is it that I always get back into this when I feel like I have nowhere else to turn?? Well, suffice it to say, this time, I think I am here to stay.

I have so much going on in my head that I need an outlet - a place where I can process all I'm feeling, get it out there, and not have anyone trying to solve something that doesn't have an answer to begin with. 

Xander was born on December 1, 2011. He was about 5 weeks early and showed up very unexpectedly. So unexpectedly, in fact, that his Daddy didn't even make it home in time to welcome him into the world. 

Fast forward 9 months and what feels like a million doctor's appointments later and here we are. Still no diagnosis or answer, just more questions and unknowns. 

What I do know is that the last week and a half has been hard, really hard. I think that, although we don't have a diagnosis yet, it has finally hit me that all this; doctors, therapists, appointments, unknowns... isn't going away. Xander will never be a "normal" kid. 

We saw the neurologist on Monday and he's ordered a complete chromosomal analysis and an MRI. Just waiting for the referrals to go through so we can tack some more appointments up on the schedule. 

Did this shock me? The truth is, no. 

Part of what has made the last week or so more difficult than most is that it's what I expected. There are so many things that I see with him that I know aren't typical and sometimes, after the kids go to bed, I google different symptoms looking for an answer. 

On Saturday night, I finally found a genetic syndrome that pretty much describes all he has presented and the medical conditions he has faced up until this point. Granted, I'm not an expert and the tests will confirm or deny what I fear, but even if I don't have it exactly right, I think I'm pretty close and it's a lot to deal with and process. 

As I was sitting here, debating what to write and if I would even start blogging this journey we are on, I came across this poem. It made me cry, but it was beautifully written and I think I'll share it in closing today... 

*******

Welcome to Holland

I am often asked to describe the experience of raising a child with disability - to try to help people who have not shared that unique experience to imagine how it would feel.
It is like this...

When you're going to have a baby, it is like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The Gondolas of Venice. You may learn some handy phrases in Italian. It is all very exciting.

After months of anticipation, the day finally arrives. You pack your bag 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 am supposed to be in Italy. All my life I have dreamed of going to Italy! '.

But there has been a change in flight plan, they have landed in Holland and there you must stay. The important thing is that they have not taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It is just a different place.

So you must go out and buy new guidebooks. And you must learn a new language. And you will meet a whole new group of people you would never have met before. It is just a different place. It's slower paced than Italy. It's less flashy than Italy. But after you have been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips, and Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy and they are all bragging about what a wonderful time they had there. And for the rest of your life you will say, 'Yes, that is where I was supposed to go, That's where I had planned'.

And the pain of that will never, ever go away, because the loss of that dream is a very significant loss, but if you spend your life mourning the fact that you didn't go to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

Written by Emily Perl Kingsley (in 1987)