Sunday, February 26, 2012


     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?

Saturday, February 25, 2012

4 Months

     Freya is 4 months old today.  I haven't come up with a good response for the endless comments of how new my baby must be.  When I tell people how old she is they inevitably ask me how much she weighed at birth.  The 6 lbs. 4 oz. response stumps them every time.  I've begun telling these well-meaning strangers that she has a genetic disorder, which gets about the same reaction as the unscripted reply of "not so good' to the cultural norm and nicety of "how are you?".
     I've given away my copy of "What to Expect in the First Year" and have learned to really appreciate the things she does.  She has been smiling for a few months now.  In the beginning they were, of course, gas smiles.  But I remember the first real smile I saw on her face.  Haven, her older sister, was trying to feed her (one of the benefits of bottle feeding), gave up (the irony is that PW infants can't or don't eat well) and walked away.  I watched Freya crane her little weak neck around to try and find her sister.  I asked Haven to come back and when Freya saw her she gave her a beautiful, open-mouthed, ear to ear smile.  Since then the smiles have been frequent and sometimes she even lets loose with a weak, cooing like giggle.  She has a few toys that rarely fail to elicit a smile. One is a bright red, mini feather duster.  This toy is also great for her tracking as she will follow it wherever we move it to.  Another is Andy's Yurok hat, a black and blue knitted cap with a traditional design.  I think learning the meaning of the design will give us a better understanding as to why she likes it so much, though Andy isn't convinced it's anything other than the colors.

Thursday, February 23, 2012


     I learned with my first daughter that becoming a mother involves the ability to surrender.  It begins first with surrendering your body to the growing of a new being, surrendering to the earth shattering pains of child birth, surrendering sleep and other basic necessities.  I thought that this time around I would have the surrendering part down.  But Freya has taught me a new kind of surrender.
     My oldest daughter's birth was one of the most empowering of my life.  I birthed her at home, in the water, with my and my partners own hands.  She nursed right away and continued to do so for 2 and a half years.  When she gets growing pains I rub her leg with homemade herb oil.  When she gets a fever I give her a warm bath and herbal tea from the garden.  I was ready to do this all over again.
     When I walked into the birth center for the last resort external version to turn my breech baby my first thought was, "I can't have my baby here".   That was the first surrender.  A few hours later I was laying in a hospital bed, hooked up to an IV of pain medicine and a catheter, holding my newborn that had been brought into the world via the gloved hands of doctors and surgical equipment.

Wednesday, February 22, 2012

The Beginning

     When I was pregnant, Fridays were the day I tracked my progress, the magical day when I would be transported from one week of new growths and developments to the next.  On these mornings I would read to my older daughter from the different Internet sites that compared my baby’s size to a variety of fruits and introduced her to new words like lanugo and amniotic.  Every week was like a small victory, one more week that the baby had survived, one more week closer to another perfect home birth.  
     It was a Friday night in January when I got the call from our pediatrician.  Now Fridays are the days I mark off from when I got the diagnosis, as if each new week will bring some thing new to my processing.  They say the first few months after diagnosis are the hardest.  I have a hard time believing this.  These first few months she’s a sweet, helpless baby who smiles fairly often and never cries.  These are not the months or years when she may be crying because she’s hungry, or finding a way to manipulate someone into giving her food.  These first few months I am not giving her a shot every night or posting a schedule of our menus and meal times.  These first few months I am not fearfully waiting any sign of extreme hunger.  These first few months it is not foreseeable how low her intelligence may be.   For now I can imagine her life with Prader-Willi as a success story, her as one of the ‘lucky’ ones who has a normal intelligence and, with a routine, can live a fairly normal life.
     This blog is about the journey we have begun, the emotional side of raising a 'special needs' baby, and the joy of her developmental achievements as they come.