Irony, an outcome of events contrary to what was, or might have been, expected.
It is a sincere form of irony that most PWS infants are first diagnosed with failure to thrive. They need interventions like feeding tubes and bottles to help them gain weight. In many cases it is because of the hypotonia that gives them a poor ability to suck. Freya is still classified as hypotonic but has always had a strong suck. Her issue seems to be tiredness and many times a total lack of interest in her food. It has gotten a bit easier to feed her but still, far too often, she just doesn't seem to want food. The common phrase heard around my house, when someone is frustrated from her lack of interest, "well, she'll want it soon enough." Why? Why is it that this baby can be so uninterested in food now, yet someday that will potentially be her driving force? We will spend her infancy struggling to keep her weight gain up until, one day, (and I heard that some parents have noted to the day when the extreme hunger kicks in) we will be fighting the opposite battle. That, my friends, is irony.
Life is full of ironies. I could, in proper Alanis Morissette fashion, write a list of ironies in my life and of those around me. I'll spare you. But I do often wonder, as I struggle for almost an hour to get 3 oz. of milk into Freya, is there a purpose to this irony, to any of the ironies of life? Are these ironies mere coincidencies given meaning to by our unending quest to understand our world; or are they some cosmic regulation of what we believe our reality to be, lessons per se that the universe thinks we need to learn?
I have always LOVED your writing, and you continue to amaze me!!! Please keep 'em coming :)_Kris (using Althea's Gmail account)
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