Angels in disguise

[caption id="attachment_443" align="alignleft" width="300" caption="Smiley"][/caption]

One day in our La Grange home, when Ellie was not yet walking down the stairs, I was getting ready to do laundry in our oh so frightening basement (yes we had one there, too).  I could not carry both the laundry basket and my child, so the 2-year-old was left upstairs.  As I came down the steep, unfinished wooden steps, I paused at the bottom where there was a concrete floor.  I suddenly had the thought that I should put a pillow or something soft at the bottom.  I laughed at myself for such foolishness.  Then I rounded the corner to put our laundry in the washing machine.  Suddenly, I heard a loud bump bump bump bump sound.  I raced towards the stairs to see what had happened.  There lay Ellie on the basement floor.  I snatched her up frantically and carried her upstairs thinking we would probably have to take her to the hospital.  I looked her over very carefully and somehow she was not injured at all.  Not a broken bone.  Not a scratch.  Not a bruise.  Nothing, she barely even cried.  I like to think that she floated down the stairs on angel wings. 

[caption id="attachment_439" align="alignright" width="300" caption="Ellie at hospital in Chicago"][/caption]

Before Ellie had her shunt placed (2004), she was seeing Angels.  Not all the time, but sometimes when we were lying in bed, she would see them flying around the ceiling in our bedroom.  After the surgery, she did not see them.  You can make what you will out of these sightings.  I like to think that they are Ellie's friends and somehow always with her.  During some of our most difficult moments I have definately felt their presence.

[caption id="attachment_358" align="alignleft" width="300" caption="Already spreading her joy"][/caption]

One day we were in the waiting area of the hospital.  There was a teen-aged girl in a wheelchair waiting with a man who appeared to be her father.  She could not walk or even move very easily.  Ben began to play with a toy near her.  I looked at this girl in awe, saddened at all the many things she was missing out on--running, jumping, skipping, spinning.  But then as I moved closer to where she was, I heard her.  She was sighing and saying to her father, "I love you."  I thought about how it is so easy to look at this girl and feel bad for all that she can NOT do.  But here is this girl sitting there completely blissed out in love.  There was not one part of her that was thinking about what she did NOT have.  She was completely in the moment and completely loving.  Her dad couldn't even take in all the love she was offering. 

[caption id="attachment_157" align="alignright" width="300" caption="The joy of being Ben"][/caption]

When I was in my doctorate program, one of the professors had twin girls who were born prematurely.  She shared with the class that one of the hardest things to get over as a parent is your own unmet expectations of what being a parent will be like.  At the time, it really struck me, because I couldn't fathom that this would be one of the hardest things to work through as a parent.  I am beginning to understand what she was saying.  When you decide to become a parent, you envision that child running, playing, laughing, jumping, reading, forming friendships.  When those things don't happen, how do you as a parent carry on and adjust your lens to something else?  How do you allow your child to be the being they chose to be, not the one you envisioned them being? 

I recall the first time someone used the term "special needs" to describe Ellie.  I was shocked, I sort of looked over my shoulder as if the speaker were describing someone else, because I certainly did not and do not think of Ellie in that way.  However, as Ellie has gotten older, it has gotten harder to "pass".  When a 4-year-old has a screaming tantrum, it is more expected than an 8-year-old.  As we have entered the school system, these "needs" have been more a part of our everday conversations. 

[caption id="attachment_435" align="alignleft" width="300" caption="A halo for Ellie"][/caption]

I like the story by Neale Donald Walsch about this angel who wants to go down to earth to learn about forgiveness.  And the angel who volunteers to go down to earth with the angel requests that they recall when they are on earth who they really are.  Whenever I find myself entangled in a messy situation with another earthling (including my daughter), I remember Walsh's story and wonder if perhaps we decided to do this little earth dance before we put on these human costumes. 

Sometimes I feel sad for Ellie, maybe sad for what she might be missing.  Or sad that it seems like her struggle is too much.  Sometimes I see Ellie and Ben running side by side and it looks like the run is so much of a struggle for Ellie and so easy for Ben.  Sometimes Ellie just looks uncomfortable in her body and she seems to have so little interest in physical life.  But then I think of how Ellie is not sad for one moment for what she cannot do, just like the girl in the hospital.  She just wants to connect with those around her.  She is most interested in spreading her joy, giving hugs, telling stories, and encouraging others.  She spends so much of her time telling me how "joyfilled" she is or how happy she feels.  Who am I to say that she should have anything differently?  Who am I to say that she is not doing exactly what she came here to do?