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
https://dare-to-hope.org/

1 thought on “Transferred To Siberia – A Diagnosis of Mitochondrial Encephalomyopathy”

  1. Anonymous says:

    I’ve looked for so many ways to describe what it was like when my family’s life was turned upside down by disease–rare disease specifically. How does a parent of a child suffering the effects of disease answer the question “How are you?” Let’s face it, that is all people know to ask. And, let’s face it, there is no answer to that question. As I read your article about being transferred to Siberia, I could definitely relate. That might be one of the best answers I could give next time someone wants to ask me, “How are you doing?” I can simply say, “I’ve been transferred to Siberia.”
    You might appreciate the description that a friend of mine borrowed from Toy Story–“What to do if part or all of you is swallowed.” It feels like that too.
    BTW, I live with grief from rare disease. My son, Samuel, whom you can see in the article, “Quality vs. Quantity: When the needs of the few outweigh the needs of the many,” passed away from a rare disease called Langerhans Cell Histiocytosis. To learn more you can go to http://www.histio.org.
    Thanks for the article.

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