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 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...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 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.
Even though Hailey doesn’t have the disability that the above story was originally written for, it still emulates to a “tee” how we feel. Whenever we read it, it’s very difficult not to shed a tear or two…one because we didn’t make it to Italy and two because we are so thankful for what we’ve found in Holland.
We now joke that, because of her PPHN (pulmonary hypertension) we’ve made a side trip to Belgium, and since “black Thursday” (see Hailey’s Blog) and her pulmonary hypertensive crisis, we’ve made a “day trip” to Luxembourg.
Editor's Note - Part Deux
Since Hailey was extubated on September 9th, we've left Luxembourg and are on our way back to Belgium. We hope to get back to Holland some day soon.
Editor's Note - Part Trois
As Hailey's PPHN continues to be a concern, we continue muddle our way about in Belgium. We're still hoping to get back to Holland.
Editor's Note - Part Quatre
Since March, we're not sure where we are, but we know that we will always have our little angel watching over us.