Friday, June 29, 2012

Their Curse was truly Our Mighty Miracle

        Ondine!  Thou fair and lovely sprite!  Since first from out an ancient lay I saw gleam forth thy fitful light, how hast thou sung my cares away! ~ Friedrich de la Motte Fouque
Friedrich de la Motte Fouque wrote Ondine, A fairy tale about a water nymph named Ondine who fell in love with a knight named Hans – a mortal man.  Ondine gave up her immortality when she fell in love with Hans, and she bore him a child.  Hans promised Ondine:  “Every waking breath will be atestament to my love."
After losing her immortality Ondine began to age, and Hans became unfaithful.  Ondine cursed him – if ever he fell asleep,Hans’ breath would be taken from him, and he would die.  Eventually, Hans fell asleep from exhaustion, and he breathed no more.
Hans Christian Anderson adapted The Little Mermaid from Fredrich's ‘Ondine’
In 1962, Severinghaus and Mitchell used the term "Ondine's Curse" for patients who developed long periods of apnea during sleep, but who would breath on command.
Ondine's Curse, the disease which afflicts my Mighty Z, is now also known in the medical community as Congenital Central Hypoventilation Syndrome (CCHS) CCHS is a multisystem disorder of the central nervous system where, most dramatically, the automatic control of breathing is absent or impaired.  A CCHS patient’s respiratory response to low blood oxygen saturation (hypoxia) or to CO2 retention (hypercapnia) is sluggish during awake hours, and it is absent to varying degrees during sleep, serious illness, and/or stress.  (See,         
     Irrespective of whether the disorder is called a ‘curse’ or a ‘syndrome’, it is a condition that is hard to accept. But, as one of my beautiful CCHS friends says, "Your curse is my miracle."  Call it what you will, but there is no denying that each one of these children is a Mighty Miracle.                    
Welcome to the CCHS Family Network!
www.cchsnetwork.orgCCHS Network

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Sunday, June 24, 2012


Last night I had yet another nightmare about Mighty Z. I know that parents of healthy kids have those as well, heck I also have a healthy kid (La La), and sometimes I have nightmares about her. My nightmares about Mighty Z are different, though, from the occasional nightmare I might have about La La.

My nightmares about Mighty Z always start with me somehow inadequately taking care of her, and they always end in Mighty Z's death. In short, my recurring nightmares starring Mighty Z are private horror movies of my worst fear: that I am inadequate to the task of caring for a chronic, complex, critically ill child. I am deeply afraid of making a mistake that costs my child her life. Mighty Z deserves the best care possible, and I hold myself to a very high standard in Mighty Z's care. I feel that I need to do better then my best to provide all the care that she deserves.The bar is set very high for my Mighty Z.

This morning, after waking in a cold sweat from my nightmare about Mighty Z, I did what I always do -- I ran to check on her. I assured myself that she was fine and that all was well; but my thoughts of inadequacy still linger, as they usually do after such a dream. I often have to be my own cheerleader at times like these, because there's no one else around to do the job. So, if and when I regale you with some story about how something terrible almost happened and the various steps I took to get Mighty Z stabilized again, maybe there's a good reason for that -- maybe I had a bad dream. 

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