As Thursday approaches us with much anticipation, I cannot help but feel a flood of emotions ranging from complete joy - to absolute fear.
It was 6 months ago that we learned about Harlie's chest mass. Since that time, the story has grown much longer and continues to change everyday. We have been on a roller coaster ride since that day and I am absolutely sure this is just the beginning of what will be the ride of our lives.
A very good friend said something to me today that I really appreciated. He reminded me to try and take a moment (during these next 48 hours) and think about what it means to be bringing home our little girl for the first time. It has been so easy to be distracted with the medicine, with the logistics, with the traveling, and with the constant fear of what the future holds for us. So for now, I am going to try and push those things aside and enjoy some time with my daughter.
Tom
ps. I apologize I have forgotten who, but someone during those first few days told us about this letter. I want to share it with you all.
Welcome to Holland
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.
by Emily Perl Kingsley
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