Friday, March 8, 2013


Elli.  What goes on in your head when you sing pop songs and church songs and songs I've never heard but that are obviously real songs and songs I've never heard because you just made them up?  What motivates you to go downstairs, play the piano for a few minutes, then come back up and play with three of your rmusical toys at once, pushing the same button rapidly so that you hear the first sound of whatever the toy does over and over and over again?  Why do you suddenly get angry and scream and throw a fit when two seconds before you were sitting silently with your thumbs pressing your eyes?  What makes you ask repeatedly for chocolate and pumpkin bread and juice and treats and fruit snacks and many other types of food (OK, that last one was a dumb question:).  Dear, wonderful Elli, what made you ask, "Dance with Mommy?" yesterday morning?  How happy you made your mother.  You had never asked for this before.  Last year I started dancing with you before you got on the schoolbus, and since then you have often asked to dance with Daddy.  But today, something made you ask for your mom. 

Oh to understand you, sweet Elli.  And to have you understand us.  You had an appointment with a child psychiatrist today.  We set it up a few weeks ago when you were going through an almost unendurable screaming phase.  It was having an impact on all of us at home and on your teachers at school.  We were hoping there might be some medication that would help you settle down, help you feel less agitated.  But now you've settled down on your own.  You're on to a happier phase with lots of giggles and laughs and jumps and bounces.  And so we wondered why we were taking you at all.

Elli, I continue to grow in my ability to love you for who you are.  I still have much to learn, but my own blindness is lessening as I have the blessing of seeing beyond what most people see.  Of seeing beyond what I've seen in the past when looking at people with severe cognitive disabilities.  Of seeing you.  The glimpses are few and often far between.  But they are there.  Times when the distance between us suddenly becomes oh-so-small.  A hug.  A kiss.  A rare comment.  Glimpses that let us know you are in there.  Waiting.  And we continue to wait for you, dear Elli.  And we have faith.  A perfect Father has a perfect plan for you.  One far beyond our comprehension, but nonetheless His perfect will for you.  And you are beautiful.  Beautiful for who you are now.  Because someday when your body and mind work perfectly, you will still be you!  That precious spirit He protected in a body that would never have to deal with temptation or sin.  And I am sure that when we meet the perfect you we will look back and say, "If only we had been less blind, we would have seen more of the real you back then."  The real Elli. 

Christi reminded me tonight of a post I wrote on Elli's blog a couple of years ago.  I had been blessed with a glimpse of an unhindered Elli.  The Lord watches over us.  He loves us.  And He blesses us with moments of perfect sight when we need them most.  And then they pass.  And we continue on in faith until the next moment comes.

So grateful for those moments.



  1. Good morning bro - wow - yeah I hear you and get what you are a much lesser extent I see it in both our China kids - both of them have a "place" they go from time to time - a place where you can't reach them - when they just cry and hit and hide and suffer - where the pain is so overwhelming that they are beyond words and you can tell that they want to be alone and want your comfort and want to rage and want to be loved - all at the same time...and our kids don't have to try to express all of that with the same filters that Elli's body fixes on her....her rage must be mind numbing for her and all of you...and as a parent all you can do is endure it because there is nothing - abolutely nothing - that you can do to help...

    And your ability to do all of this without loosing your focus and heart...

    Thanks for getting it guys - because you really inspire me...

    and you wrote this for me today - just so you know!

    love you guys - aus and co.

  2. I am reading a wonderful book right now "Self Knowledge and Self Discipline" by Rev. B.W. Maturin. The author says something that so fits Elli, I think. He points out, "the spiritual is more real than the physical." I know I've known that all my life but I've never realized it. I believe it's her soul that you see during those fleeting moments, don't you?

  3. Those "glimpses" come in so many areas of our lives and I like the way you put it: "And we continue on in faith until the next moment comes."