Emily’s 1st birthday is about 2 weeks away. In some ways, the past year seems to have flown by. In other ways, Emily’s birth and her time spent in the NICU seem like a lifetime ago. So much has changed over the past year. We have had some trying times and some joyful times. We have learned things that we never knew we would have to learn. Above all, we have been blessed beyond measure!
I recently came across a story again (I say again because I have read this several times before) and I wanted to share with you. It is written by Emily Perl Kingsley, and it has touched my heart in a very real way.
"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 guidebooks and make your wonderful plans. The Coliseum, Michelangelo’s 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 flight plan. They’ve landed in Holland, and there you must stay.
The most 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 guidebooks. 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 awhile and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland 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.'
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 get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland."
In our “neighborhood” of Holland, we have g-tubes and syringes instead of bottles. When our child cries at night, we have to turn off the pump that feeds her and unhook the feeding tube before we can pick her up to comfort her. We have standers, special chairs and bath chairs instead of exersaucers and highchairs. We have multiple doctors and therapists to visit rather than just one pediatrician. We have special orthotics to put on Emily’s feet instead of cute shoes that match her outfits.
I don’t say these things to make you feel bad for us, because there is nothing to feel bad about. Once we got over the initial shock of not going to Italy, we have learned that Holland has a lot of great qualities. We have a daughter that enjoys the simple things in life, like a ceiling fan or a Friendly Firefly that doesn’t mind being chewed on. Because of her g-tube, we can give our daughter medicine and she doesn’t have to taste it. We haven’t had to baby-proof the apartment. When we lay Emily on the floor on a blanket, we don’t have to worry about what she may get into and where we might find her if we go into the other room for a minute.
Mike and I have never been to Italy, so we don’t know what it is like there. Holland is the destination that God has chosen for us and we wouldn’t trade it for anything in the world. Yes, we have had to adjust our dreams for Emily a bit. We have simpler dreams for her now. We know that we will always see other kids doing things that we wish she could do, but we will not allow ourselves to compare. More importantly, we will NEVER let Emily feel bad about the things that she cannot do. We will celebrate EVERY victory she has no matter how big or small. We want her to know that she is special because God created her, not because of anything she may or may not accomplish.
As our friends and family, we invite you to do the same. We know that most of you have not been to Holland, and you cannot understand what it is like to live there, but you can join with us in celebrating the beautiful girl that Emily is. She is not only beautiful because of her wavy hair and her hazel eyes, but because God made her and she is exactly the way that He intended her to be.
We don’t know what God has planned for us down the road. We don’t know if we will ever get to go to Italy, but I will tell you this: Holland is an amazing place! We would never have been able to enjoy the beauty of this place if God hadn’t chosen it for us. We are thankful that He knows what is best for us. We have found beauty that is beyond what we ever thought we would find in Italy.