Friday, December 3, 2010

Welcome to Holland

This was a wonderful description of what it is like to raise a child with a disability.

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 aniticipation, 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 yo 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 have never met. It's just a different place.

It's slower-paced than Italy, less flashy then 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 very significant loss.

But...if you spend your life mourning that fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things...about Holland.

Wednesday, December 1, 2010

    Lincoln David Parkinson was born on August 31, 2007. He weighed in at 8lbs. and 9oz. and was as the saying goes a "healthy, bouncing baby boy". Lincoln was perfect. He had my nose and my eyes, daddy's skin tone and lips. I loved him. I was so excited to be his mom and to see where this new life would take my life. I dreamed about the day he would say his first word, wondered what his favorite toys would be and was certain his life would be just as I had always imagined.
    Today marked a day in my life I never imagined. Today my sweet Lincoln was diagnosed with Classic Autism. As Dave and I sat in a small, white room we were given news that completely altered any life plans I had made. As I sat listening to Dr McCoy telling us of our situation I kind of couldn't believe that I was "that mom" who had a child with a disability.
    I read a book called "The Barbers Song" where the author wrote these profound words, "How quickly the seasons of life change. A short time after we started our life as husband and wife, Arlene conceived our first child. Although we were stepping into a time that would give us great joy, I think we were fortunate not to have been able to see the challenges that were a part of our future. If this had been possible, we might have missed much happiness and growth in our efforts to sidestep the pain that lay ahead."
    As I thought about the point of this, I thought, "would I have changed my path had I known what we would be facing and the many challenges this would bring?" I really thought about that question and as I was completely honest with myself I realized I wouldn't change a thing. For me, that realization was a big deal. I seem to be one of those who tends to take the easy road rather than the road less traveled. I have come to realize I am not taking the seemingly smooth road I had expected. Instead I am taking a road with many bumps, forks, and hard to read signs. However, this unknown road can become familiar, easier to navigate, and even smoother as I work with my family and professionals in making our own roadmap.
   I also know I wouldn't change a thing because I was blessed with the most loving, amazing three-year-old I could have dreamed of. He just happens to have autism. As I have thought more about the diagnosis, I have realized this doesn't change how sweet Lincoln's kisses are, or his smile that can melt my heart, or his amazingly happy demeanor. The fact is, I know Lincoln was sent to our family, to me, for a reason. I know I am just beginning to learn the amazing things he will teach me. I am now so happy and at peace that I am "that mom". My perfect bouncing baby boy is still perfect just in a different way I had imagined. Lincoln, I know this diagnosis doesn't define you and I want you to know I love you and that you will always be my favorite Lincoln.