A Different Path

As much as we do not consider B's allergies to be a disability, in essence, they are the very definition of a disability, as they are a physical impairment that significantly limits her ability to eat. We are living with a child who has a disability. She is not disabled. She is not broken. She merely has a disability. (I hope that makes sense). If she doesn't outgrow her food allergies by the time she starts kindergarten, she will be eligible to go on a 504 plan. This frightens me so much. As the stigma of being disabled, being different, is a burden for any child attending school. Fears of "food bullying" keep me from looking forward to the future. Often times, I feel robbed of the life I dreamed of having with my daughter. That is not to say, that she isn't perfect in every way I could imagine. We are so very fortunate to have such an amazing daughter. But it is very different than what I envisioned when we planned for her.

Robert Frost's poem, The Road Not Taken has always been one of my favorite poems. I taught it to students while serving in the Peace Corps, and portions of the poem have always resonated with me. Sometimes in life, we are forced to take the road less traveled by. In the case of parenting a child with severe food allergies, this is certainly the case. I recently read a blog post that struck me to the core. I feel compelled to share it with you, in hopes that I can explain what it's like being a parent to a child with food allergies.

WELCOME TO HOLLAND

by

Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

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.