Monday, September 8, 2014

The Naming

Here is something I wrote recently to share with people at our fundraiser for The Foundation for Prader-Willi Research.  Yes, we're all in now, fundraising and all.  I will write more about that later.  But for now:

Freya’s Beginning

I didn’t have time to be devastated.  My intended home birth turned into a ‘non-emergency’ cesarean in about 2 hours.  My fluid was very low and the baby was barely responding.   So we took some deep breaths and down to the OR we went.  
            She didn’t come out crying and, through my morphine haze, I could tell there was some concern.  But then my baby, wrapped snug in her hospital commissioned blanket, was lying on my arm next to me.  I spoke quietly to her and she opened her eyes for the first time. 

I held on to that. 

She may not have come fluidly into the world from between my legs to rest against my naked, intact belly.  I may not have used my hands to help her out of my body and into the world. I didn’t even get to feel my womb tighten around her little body as she resided safely inside.  But I was the first person she laid eyes on. 

And I held onto that.

I spent most of the next few days in the hospital just trying to feed my baby.  My first had nursed so well, but this one wouldn’t, or couldn’t nurse, and she just kept falling asleep.  I tried nipple shields, special spoons, finger feeding and syringes.  My milk came in and I thought she had finally caught on.  She gained some ounces and they let us go home.


My baby was so small…so quiet…so weak…so tired.  My oldest daughter would rub her feet while she attempted nursing to try and keep her awake.  My partner and I tried to understand the reasons; because of the cesarean she wasn’t in her body yet, perhaps my due date was wrong and she was younger than we had thought, maybe she just wasn’t getting enough food to begin with.  Every day she lost more weight. 

I held her, naked, to my chest, for most of the first few weeks.  I slept that way.  I was trying to feed her soul with my touch, to awaken her to this world.  She slept most of this time, as most newborns do.  But there were times that she slept so deeply it took moments of jostling to wake her.  I would wake in terror in the middle of the night; afraid she had passed with out my knowing.  The times when I was awake I could feel a subtle shift in her being, as if she was slowly just letting go.  Those were the scariest moments. 
The last moment I remember; I was home alone.  Baby was sleeping against my chest as I wandered around the house.  Then I could feel it; that slow retreat; the silent, backwards stepping out of a room so as not to disturb those in it.  I could feel her spirit trying to quietly remove itself from that body.

But I held on.

I sang to her.  I called to her.  I jostled and cajoled her.  I sobbed and pleaded and frantically paced the hall as each passing moment found her still asleep.  Finally, her little body stirred against mine and she fluttered open her eyes.  The day was November 1, Dia de los Muertos, Day of the Dead.  I decided then and there that my baby needed a name.  She needed a name to let her know that she was in this world now.  That she was wanted.  A name that I could call to her to bring her back if she tried again to leave.
I would not sleep until she had a name.  I could not sleep lest her spirit decide to take flight from her nameless body.  We spent hours trying on names but could not find one to fit.  We knew her middle name would be Jude, in honor of ‘Hey Jude’ having been played in the OR during her birth.  I fell asleep somewhat consoled, with Baby Jude on my chest. 
The next morning I woke feeling hopeful.  Baby Jude was still with us and had even lost her umbilical cord in the night; to my anxiety ridden consciousness it was a testament to her commitment in remaining with us.  That day she got her name. 

Freya.  The Norse Goddess of love, beauty, fertility, death and war who reigns over her own field in the afterlife, accepting those who do not go to Valhalla. 

Freya Jude…a Viking Goddess and a song of comfort.

Friday, January 3, 2014

A Deep Breath

     I just came through what I imagine to be a normal part of the 'process' of parenting a special needs child.  To say it was a minor period of depression would be a bit dramatic, although fairly accurate.  I can pinpoint various factors that could have contributed to this (ie post-pardum hormones, the 13th moon) but the result is what is important.  I've begun to see Freya in a new light.
     Over the past year I have, for the most part, felt very positive about Freya and her development.  I held what I thought were attainable expectations of her reaching her milestones.  I even thought that I coped quite well as each notch on my time line came and went without apparent success.  A few months ago I had begun to look through old pictures of when Freya was a baby, before diagnosis.  Without going into too much detail I'll just say that now it is obvious to me that there was something different (I cringe thinking of using the word 'wrong').  At the time I was able to convince myself of various things, other than there being something different, and no one corrected me.  While I truly understand why they wouldn't, it has not given me faith that when people say they think she is doing great they really mean it.  As my doubts about my own perception of my daughter were beginning to build something very meaningful to this whole process happened.  I met another PWS baby, 4 months younger, already doing what I had been working so hard for with Freya.  This baby was walking.
     In all fairness, 'they' say that the average age for walking with this disorder is 2 years and from the many families I've met on the internet that seems to be on the young side.  But here is where my mind went into guilt mode.  I wasn't doing enough therapy at home.  I should've gotten her braces for her ankles.  I should've started her on this supplement sooner.  Blah blah blah.  Many well intentioned people, myself included, pointed out that even in 'typically developing' children the age differences for reaching milestones can be drastic.  But all of the little 'defeats' of the past year seemed to catch up with me.          
     Now I could see the concern in the therapists eyes when she asked if Freya ever seemed interested in other kids.  Or the sound of shock in another therapists voice when I told him 2 specialists had said she seemed to be on the less affected end of the PWS spectrum.  I began to notice that perhaps her attention and desire for playing with a basket and a pile of multi-colored string was more involved than just her inability to walk and do something more interesting.  And maybe the fact that she use to say baby but couldn't seem to anymore was more serious than I wanted to believe.  All of this began to build over a matter of weeks.
     I wish that, in order for a more interesting and orderly story, there was some momentous occasion to turn the tides.  But in reality it was in the middle of cooking dinner and silently watching my happy non-toddling toddler play with her basket of string that I realized, I mean, really realized, that Freya is not 'typically developing' and probably never will be.  All of this time, through all of these therapies with their damn questionnaires about what milestones they're reaching at what age had me in the wrong mind set.  I had been thinking of Freya as a child who is delayed.  And if we work hard enough, and do the right therapies and give her the right supplements then some day she'll catch up to her peers and they can all go skipping down the road of 'typical development' together.  In that moment in my kitchen, with the oil snapping in the hot pan and Billie Holiday playing in the background and Freya diligently taking one string out of her basket at a time to add to her neat pile of more string, I realized that Freya is a non-typically developing special needs child.  And I breathed in deeply from the weight that was lifted off of my shoulders.
     Perhaps this sounds like defeat, or giving-up.  On the contrary, it is acceptance and unconditional love.  And it is full of hope.
     We aren't doing any thing differently.  She still goes to therapy and gets her supplements.  I still envision her being able to have a full life when she is older, one where she can fully function in normal society and be happy.  I honestly don't believe that cognitively she is unaware of anything.  Freya is incredibly social and loving.  She is freaking hilarious and is saying new words often.  She has started taking a few wobbly steps on her own.  Amongst all of this I can also see some behaviors (and even some medical issues) that are apparently typical for PWS which is a whole other part of the 'process'.
     But I'm not going to get upset the next time a therapist pulls out one of the obligatory timeline questionnaires.   I'm not going to stress whether she can put the red ball in the red cup or how good she is at pointing.  I'm going to do all of these therapies with her and more.  But I'm not going to think of her as delayed.  I'm going to follow the lead of her Dad and believe in her path and her timing and her ability.
     I was talking about this with a friend on Christmas.  Her words brought such joy to my heart that I have been thinking of them often.  She expressed how loving Freya is and how she has this unique ability to make people feel so special.  Because of this, she pointed out, Freya will always have people on her side routing for her.
     I love how she phrased that, "the ability to make people feel so special'.  We may not be able to check all of the boxes on her development evaluations, but I think this quality will help get her farther in least where it counts.