The Battle with the Bottle

I have spent the better part of Paul's life stuck in the middle of a battle between him and the bottle. I have analyzed the situation, obsessed over the situation, cried over the situation and obsessed some more.

On February 1, everything came to a crashing halt when P got an upper respitory infection and completely stopped eating. The prize you get when this happens in called an NG tube. Oh, but that not all you win ... guess who gets to shove that pretty little tube down her little guys nose!?! You guessed it, ME! Ok, Ok, I know that I am being a little dramatic but I have spend soooo much time trying to avoid this that it is just that I feel so defeated.

Now there is talk of a permanent feeding tube in belly called a G-Tube ... again, been trying to avoid this for a while now since he is capable of eating. We are stuck because I know my guy isn't going to eat with a tube down his throat and the G-Tube may be the only way to get him eating orally again.

We have done the preliminary stuff for the G-Tube ... upper GI, reflux probe and even met with the surgeon but we are having really REALLY hard time pulling the trigger. I lay awake at night and literally having conversations with God and trying to separate what I want with what will be best for Paul. We have so many other things to focus on and so many other obstacles to overcome that won't be solved with a simple operation. I feel like I have spent so much time on eating and now it is time to move onto those other things but it is just incredibly difficult. I never imagined I would have a tubie.

On the day I was wheeled into the NICU at Children's Hospital I was given a packet of papers and included in it was the little story below. I have come to realize that it is pretty popular across the globe for those of us in the special needs world. Some days I absolutely hate it but others it is helpful. Anyone that knows me, knows how much I adore Italy ... all things Italian really. My grandpa once told me I had the heart of an Italian. So, it is strange that I can find comfort in Holland .....

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.