our tour guide

Recently some good people in our lives turned us onto the website Littlest Warrior where we found a short essay titled "Welcome to Holland." It is all about the feelings and emotions behind raising a child with a disability or challenge. With an effort to preserve the integrity of the essay, please see the complete read below:

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.

Do you ever get that feeling when you say to yourself, "I think that the homily was written just for me?" With the recent birth of our beautiful baby girl Hollander (and our Berger Dutch roots), it felt like the above was written just for us. Shea has become our tour guide. 

The above is a great read but it really only just scratches the surface of the emotions and feelings behind breaking through the adversity of raising a child that requires a team of specialists. As a parent, all I want to do is equip our son with a tool box to tackle his wildest dreams, but there are those moments when you are told his wildest dreams might have to exist within certain boundaries. Leveling moments yet at the same time, the parent and believer inside us comes out screaming I can't wait for the day when our Shea dude proves them wrong. Regardless, Erin and I are fulling grasping the concept of being Shea's biggest fans. 

In recent months our Shea dude is taking on new and fun challenges (no influence from his father...ha). The boy can't stop kicking the soccer balls & beach balls in the backyard. He rides his scooter everywhere, colors like crazy and barbecues for us daily. 

All of the above has been so fun and enjoyable to watch as a parent. However, hands down the best challenge and most fulfilling to watch (well let's be honest, it has been the coolest interaction Erin and I have ever been lucky enough to witness)... is watching Shea be a big brother. Shea loves his Hollander and man does Hollander love her Shea. And to think that this is just the start. Erin and I are so lucky. 

People ask us all the time what it's like to live day to day. To frequent doctor's offices practically every week. To know that Shea's shunt could fail at any moment. To not know what his vision truly is or will be. To know that he might have to be rushed into emergency brain surgery at any moment. To not know how his Hydrocephalus will impact his life...

Sure there is a lot of unknown, but with Shea as our tour guide, life is good.