There's a famous poem that circulates often within the special needs community called "Welcome to Holland". Many of our families find solace in that poem, and many do not, and a few have created their own.
Here's Nick Burton's version, "Welcome to the Island".
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. Michaelangelo’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, in midair, a hole opens in the plane's fuselage and you and your spouse are ripped out.
Somehow you land in the ocean and survive the several-thousand foot fall. It’s nighttime, in a thunderstorm, and you pick a direction and tread water. You do your best to avoid drowning, but are repeatedly crushed with waves and the water is freezing. Eventually, you find a miracle in the feeling of hard ground at your toes. Even though you can’t see it, you’ve found land. You pull yourself onto the shore, and collapse in the darkness—sobbing and exhausted.
When dawn arrives, you have the briefest of moments where things seem normal. Then, you remember what happened and are filled with sorrow as you look around at your alien surroundings. You and your spouse search the unfriendly terrain of what you learn is a tiny island, and discover that you are its only inhabitants.
The first year on your island is hard. You have to learn how to survive in the wild. You learn how to find sustenance and build shelter with no training or guidance. Everything you once thought was important or worrisome seems so trivial now. You re-learn how to live. While you gave up on Italy, you held hope that you would be rescued and brought back to civilization. You wish for a boat or a plane to spot you. On the hard days, you wonder if it would have been easier if you wouldn't have survived the landing.
As the years pass, you come to accept this new reality as your life. You begin to appreciate things that you always took for granted: The simple beauty of silence and solitude. The warm, salty ocean breeze. The darkest night sky filled with a billion bright stars. The pride found in building your own world from nothing. The transforming strength you’ve gained from this experience.
Occasionally, you and your partner think about Italy and cry. You cry because it all should have been so simple and lovely. You laugh too, thinking about how different your lives are and how no one you used to know would understand. You’ve stopped looking for planes and boats—they’re not coming. You don’t care, though, since you love your Island deeply—what you’ve made of it, and what it’s taught you. You’ve learned how to make your own hope.