When my daughters were diagnosed with autism at age 2, I stumbled across the essay “Welcome To Holland” by Emily Perl Kingsley, as all newly diagnosed parents eventually will. The essay parallels having a special needs child to arriving in Holland when you planned a trip to Italy. As many do, I took the essay to heart; it stood as my new guide: my mantra. I dutifully traded in my Italian textbooks. I learned to speak Dutch rather fluently. I acted as a tour guide for those newly diagnosed parents who came after me, showing them how beautiful Holland could be. My closest friends all lived in Holland with me. I came to be happy and content there.
You can imagine my shock when I received the news that my daughters had been diagnosed with a life-threatening condition called mitochondrial encephalomyopathy at age 4.
I’d been transferred to Siberia.
I left immediately: silently, without packing or preparation. “This is SO unfair!!!” I screamed inside my own head. “Why us? We were doing so well in Holland! Why do all my friends get to stay in Holland? I don’t want to go to Siberia!”
I now sit alone in Siberia, wondering how big the population is. I can’t understand a word of the language; I’ve no idea what there is to do here. I cannot believe the costs for snowshoes, snowmobiles and sleds, and how difficult it is to get them. I am snowed in with no hope of getting out.
At home, my friends complain of Holland, of the cost of clogging lessons and the fact that their tulips did not grow as high as they hoped. I try to be understanding as I struggle to remember when I didn’t like living in Holland either. But I can’t suppress the anger of not being able to go back. The guilt and shame of my anger is immense.
I look out my window and wonder if I’ll ever see the beauty of the snow. I wonder if that ice ever thaws. I hug my daughters and tell them Mommy will never give up trying to get them out of Siberia.
I look at the large mountain up ahead and know there is but one thing to do.
I wonder if Siberia needs a tour guide?
— Gina Gareau-Clark