Thursday, April 19, 2012

This Too Shall Pass

     I've spent the past few weeks in a 'head in the sand' kind of mode.  We got the news that Freya has moderate to severe sleep apnea.  This spiraled me into a bit of a depression; the knowledge that she has to wear a mask to sleep now. This felt like a turning point of some kind.  Up until then she was doing very well on the spectrum of symptoms; cognitively she's very aware and social, laughing, smiling, holding her head up and her weight is gaining steadily without the use of a feeding tube.  So I had hopes that we could breeze through this sleep study without any negative results.  But alas, her results were like every other infant with PWS that the pulmonologist has seen.
     One of my concerns was for our way of life.  We plan to spend the summer by the river in a yurt, with no power.  We like to travel and camp where there is no electricity.  Now, not only was I going to have to strap a mask to my baby's sweet little face when she's sleeping, but also be attached to an outlet indefinitely.  This was the first time I cried in front of my partner since the diagnosis.  
     Thankfully I am more hopeful now than I was before.  I've learned from friends who have worked with disabled adults that, if they start the mask at a young age, it just becomes part of their routine.  There are also battery packs for the masks.  And it's fairly simple to hook up a small solar power set-up (simple for my partner, unfathomable to me).  So there are options.  
     On a journey such as this, it is important to remember there will be light.  So much of the news seems unbearable at first; a heavy, dark cloud blotting out any ray of sunshine.   The unknowable is scary, but perhaps what's worse are the images conjured up by reading about every possible symptom for this disorder, every obstacle we could potentially meet along the way.  Three months ago a diagnosis of PWS seemed the worst possible outcome (of the disorders they were testing her for).  Today, it is bearable.
     I think the old saying, 'this too shall pass' is a wise sentiment to remind myself of.  And of course I don't mean the symptoms.  But the feeling of being overwhelmed with a new one, the feeling of 'how will we get through this?'.  Because, let's face it, we get through it.  What are the other options?  Life goes on and eventually, if we are open to it, we find contentment, acceptance, and most importantly, laughter.