Wednesday, January 7, 2015

Anyone Going to Holland?

I recently sent a narrative titled “Trip to Holland” to a friend whose son is autistic.  It’s a beautifully written essay which metaphorically describes a mother’s reaction to finding out that her child is autistic.  You really need to read it to truly grasp the poignancy of it, so here it is:

Trip to Holland by Emily Perl Kingsley
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 Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several 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 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 a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And 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 experience will never, ever, ever, go away. 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.

This made me reflect on how this “trip to Holland” is all a matter of our perceptions.  Whether it’s related to our children, or to life in general, we have all been on a trip to some place we didn’t like at first.  We’ve been in those places which made us uneasy, anxious, or scared at first. 

My oldest son was born with a 5 page list of allergies.  After eating eggs one day, we discovered that he was allergic to eggs and peanuts.  After going back and forth to allergists, we learned  that he was also allergic to everything from grass, every imaginable tree, all nuts, dust, dander, pollen etc, etc. 

The first 5 years of his life, I lived in paranoia and carried an Epi Pen and antihistamine everywhere I went.  Being a vegetarian, I ate nuts and peanut butter for protein while pregnant. Had that caused his peanut allergy? I felt such guilt, and needless to say, avoided nut altogether the second time. I never would have imagined that something as ubiquitous as peanuts could possibly kill my baby. So I fought with his preschool teachers who insisted on keeping his Epi pen in the office rather than the classroom, or for not making his classroom nut free.  My heart skipped a beat when the caller ID showed his school calling for any reason.  I rarely left him with a sitter to go out with friends.  On those few occasions when  we did, I frightened the poor sitter after  demonstrating to her how to use the Epi pen in case of an emergency.  I remember crying, asking God why this had to happen to my son. 

Like Emily, so many other parents have taken this same detour to Holland and can empathize with her. I feel for my friend whose son is diagnosed with a gluten allergy which is further aggravated by kidney issues.  When his body retains water, his cheeks puff and  his poor belly bulges out, hard as a rock. Her eyes well with tears and you can feel the pain in her heart, when she speaks about what it is like telling her son that he can't have a munchkin....maybe never.

Then there are children who are born with diabetes and are followed around by a nurse with a blood sugar monitor all day in school.   I can only image what the mother goes through.  They can't play too hard because their sugar level may go too low yet they need to get exercise otherwise the levels may get too high. 
The parents who find out that their child is visually impaired, born deaf  or have some other debilitating disease can also relate to this trip to Holland.  They also wonder what Italy would have been like.  The same sentiment may strike parents who find out that their child is gay. They weren’t expecting to go to Holland. How would the world view their child?  Would they be ridiculed or outcast?  But now they are there, and like Emily, they are learning to appreciate Holland....and eventually they may even come to embrace it.

My trip to Holland, compared to those of others, turned out not to be so bad. We are given, I believe, only what we can handle.  It makes us …and our children…stronger individuals.  We all learn to accept ….and love…where we are.  Life is a matter of perceptions.  What we perceive to be a weakness or difficulty, will be just that.   We can choose to complain about never having seen Italy or come to view Holland in a whole new light…just as Emily says in her piece.

For some, Italy may seem like a dream.  But who knows, that "perfect" dream could one day... turn out to be a real nightmare.

No comments: