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Why I Stopped Dreaming About My Children

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I used to dream about my children. I would dream of them running against the wind, leaping into the water unafraid, skating down a slope. I would be there cheering their first at bat, pushing them to ride their bikes, showing them the wonders of the sky. Other times, I would be teaching them to dance, to think complex equations, Laplace transformations or thoughts about our God. I’d dream they would be great kids — happy and full of life. My dreams were in the realm of plausibility. I’d yearn for a peaceful, healthy, vibrant life for them. To live it better than I have. To live it longer than I will. I knew a time would come when a Band-Aid would cure the worst of falls, a pill would take care of a cold, a conversation and a kiss would help mend a broken heart. I expected these to be the exceptions and not the rules this early on.

Two years ago, my family was tossed into the world of rare diseases. Since then, these dreams were no more. Our before and after. Our watershed. A kind of origin story for all of us.


It all happened in the span of six months. A one-two punch. My newborn child was diagnosed with a form of leukodystrophy, Pelizaeus-Merzbacher disease (PMD). He was born with insufficient myelin; motor skills are severely affected. Crawling, eating, talking, even breathing would be a challenge. Spastic, quadriplegic, deaf, hypotonic, desmyelination, oligodendrocyte — these are words I quickly became familiar with. They’ve become part of my vocabulary. These words roll off my tongue as if I’m a medical expert. In addition, my healthy 4-year-old was diagnosed with Polyostotic Fibrous Dysplasia (PFD) — a type of bone tumor — after an otherwise inconsequential fall. No contact sports, I was told. His bones would break easily. Expect many surgeries. Dreams were crushed — both conditions are incurable, unrelated, untreatable, painful and rare. I now dream of neurons, bones, therapies, single-story homes, uncertainty. I think of time as a cruel friend against whom I race for a cure, for a miracle, for a lifesaver.


Two years have passed. I don’t need to dream about my children anymore because I’ve learned to enjoy each moment of wonder with them by my side. They’re great kids. They have infectious smiles, gazes that touch the soul, a longing for companionship and a thirst for life. They don’t play sports, but they swim and attend therapies. They’re unafraid. They’ve healed my carefree spirit. They’ve humbled me with their love. I’m on the ropes, hoping I’m up to the task to parent these special children. Despite all the unimportant things they cannot do, like other special and rare kids, they do so much. They awe grown-ups and children alike each day. They’re the courageous warriors, the heroes that fight the big and sometimes un-winnable, battles. They fight for their lives, with faith, with will, with love and with dreams of hope.

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Originally published: March 4, 2015
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