Tuesday, March 30, 2010

Piecing Together



With Beanie's baby pictures in hand, I started cutting.  Cutting around the perfect outline of a perfect baby's body.  As I take scissors to paper and trace around our first born's body I wonder how this will turn out.  This wasn't an art project or scrap-booking fun, this was practical.  I needed to have a visual, some preparation.  Then in what seemed like something only a deranged person would do I cut off all the limbs one by one.  Who would mutilate a picture of their own child?  It's not something any mother would do willingly.  Consulting the notes from my ultrasound appointment, I reassemble each limb in a best-effort attempt to create an image of what our unborn baby's body will look like.  There is however, one limb that doesn't go back on.  The end result is sobering and my heart breaks all over again.    

After our meeting last week with a team of doctor's things were starting to look up.  It was confirmed that Lamp's head, brain, heart, lungs, kidneys, liver, etc. all look normal--good even.  No chromosome disorders--another positive.  They expect a normal birth with no immediate intervention needed.  But the limbs... This is very rare, one of them says as they all nod in agreement.  Very, very rare.  So rare that none of them have ever seen anything like it and therefore a diagnosis at this point is almost a complete guess.  Not that a diagnosis would help much... within each of the possible diagnoses there is a huge range of what to expect.  A name to this anomaly won't tell us about possible mental and developmental delays.  A name won't tell us how many surgeries to expect down the road, or what her mobility will be like.  A name won't tell us how to deal with stares from complete strangers or even the initial stares of her own parents.  A name won't tell us how to prepare for this new little life... a little person all her own, with no knowledge that there's anything wrong with her little body in the first place, but challenges ahead nonetheless.  A diagnosis is just a name.  But at the same time, there would be some comfort in having a name.  A point of reference, a place to start...  

With the baby still in utero, there is almost a dream like quality to this situation.  We're dealing with it, but at the same time we have yet to deal with it.  There is a certain amount of acceptance, but in the same breath we have no idea what lies ahead.  As I piece together a picture of what I think our baby might look like, I find myself trying to piece together a picture of what our new lives will look like as well.  An obviously impossible task.  I'm not saying it's all doom and gloom, but you would never choose this for your own child.  The transition to any new baby takes a few months, and almost 1 1/2 - 2 years to really settle into that new normal.  I find myself wondering if this will ever feel normal... although at some point it probably will.  I'm torn between not wanting the future to come, while still wanting to welcome and celebrate a new baby coming into our family.  Excitement mixed with grief... I wish there was a name for that.