Saturday, January 28, 2012

Through a Child's Eyes

Elyse has asked for bunk beds in her new bedroom when we move.  We were talking about that this morning and she says, "But someone else needs to sleep in the other bed, I need a big sister to....HEY!  I know!  MY SISTER!  We can put a crib on the bottom and a bed on the top!  Isn't that a good idea?"  "Absolutely," I told her.  Never mind that we seem to have overlooked the small issues of the night nurse, the loud-ass oxygen condenser and the fact that Anabelle never sleeps more than a few hours at a time.  To Elyse, it was the perfect solution.

A little while ago, Elyse had asked me when Anabelle was going to walk.  I took a deep breath, expecting this to be "the BIG talk" I've been waiting for, and I began with, "Well, you know that your sister is different from other babies you know, like Piper and Mia?" (baby sisters of her friends).  She got a confused look on her face and said, "No, she isn't", and then went back to playing without waiting for an answer to her original question.  I just sat there for a minute and let it sink in that somehow, Elyse has totally managed to miss the ways in which her sister is different.  Her 4-year-old mind only knows the reality in front of her.  She is not crippled by the vision of "perfection" that I lost in my mind.  And I realized that labels like, "differently-abled" and "special needs" are descriptors that WE have applied to Anabelle and her friends.  What if we didn't?  When I meet a new special needs friend, I always introduce myself as "Kate, mom to Anabelle, 20 months, with lissencephaly, microcephaly, cerebral palsy, central visual impairment, sleep apnea and undetermined seizures."  What if I said, "Kate, mom to 4-year-old Elyse, lover of all things musical and a sense of humor that will whip your head around, and 20-month-old Anabelle, owner of the world's longest eyelashes and a perma-grin"?  Why can't I stop defining Anabelle by her disorders, and start defining her by her PERSONALITY??  I'd like to conduct an experiment where for one week straight, I do not acknowledge any of Anabelle's disabilities, even to inquiring new minds, and see what results that yields in the way people interact with her.

I have said before, and I am sure will say again many, many times: God did not give Anabelle to Brian and I.  She was intended for Elyse.  We were just the parents already in place.  To Elyse, Anabelle is the perfect sibling: never cries, never steals her stuff, never demands attention, lets you dress her in any manner of ridiculous costumes, will take on any menial role in imaginary play.  How I wish I could shed my lifetime of social constraints and view my beautiful daughter only through a child's eyes

My all-time favorite picture of my girls (as seen in the Philadelphia Inquirer!  LOL!)

Sharing the love

Goofing around


  1. I just love how you put your experiences into words and let me understand just a bit of your world. I find myself telling people about Anabelle all the time. :)

  2. That is really sweet. :). Maybe I should start thinking of Ianin terms as a gift to his big brother. I know he will be different than your average teen and has so much more compassion than a kid his age.