Thursday, October 30, 2014

Snapshots of my Wednesday Evening

We walked into church and Charlie ran off to drama practice for the Christmas musical.  Emma and I had some time to wait until our respective Wednesday night programs at church started, so we joined some other families sitting at small tables eating dinner.

Let me just say from the get-go that nothing and everything about the next 45 minutes was remarkable or outstanding.  It's just an evening in the life of a very special girl in a place that has learned how to love her well.


  • She walked up to a table where some of her friends were eating.  These children have known Emma all their lives, so it is nothing but normal to them that they immediately and without prompting reached over and handed Emma a chip for one hand and a tomato slice for the other.  They know Emma won't eat them, but they offered her something "squishy" to play with because they know she likes the feeling of food.



  • The youngest among them is just learning to talk, and he was thrilled to announce to me that "Emma TAKED it!" when he offered her his chip.



  • A grown-up friend saw her dancing with her chips and yelled, "BEAR!" from across the room.  She danced excitedly as he ran up to her to dance her around, thrilled that he didn't have to be as gentle with her anymore now that all restrictions are lifted from her spinal surgery recovery.  He loves to make her laugh.



  • An adult from another family was waiting for his children in drama practice also and looking at his smart phone.  Emma walked up to him and looked at his phone with him.  As they looked at pictures together, Emma sweetly laid her head on his shoulder.



  • When Emma was finished looking at pictures, she found yet another mom who loves her who had a bag of chips at her table.  I told Emma to "ask nicely" if she wanted one, and Emma patted her chest immediately in an unmistakable "Please, can I have one?" Emma-sign.  I got to actually engage in a grown-up conversation at that point, and 10 minutes later, I found that Emma had made quite a collection of chips on a side-table she claimed as hers.  Manners get you what you want, apparently. :)



  • After we cleaned up the chips, I sat her down at one of the tables to get her a dose of food for dinner.  While I was tube-feeding her food, she grabbed her big water syringe.  Without missing a beat, she pointed the syringe at her belly and pushed the plunger down.  This would have been hugely effective, had the syringe actually been connected to her G-tube.  As it was, she just sprayed herself with water.  She looked around at everyone with a look that demanded to know WHO had gotten her all wet!  Everyone around us understood how cool and hilarious that moment was and we laughed.



  • We went into the bathroom to dry off.  There's a step-stool in that bathroom so kids can wash their hands, and, after a quick change, she walked right up to those steps, climbed up by herself, reached up and turned the water on by herself (I'm in trouble), and scrubbed her hands under the water.  



  • Outside the bathroom, a dear friend of mine was standing next to the drinking fountains.  Emma grabbed her hand and led her to the fountain, clearly asking her to turn it on.  My friend showed Emma how to work the drinking fountain.  Emma is a quick learner when motivated.  I'm still pretending to be mad at my friend for teaching Emma that ... 



  • Eventually I led Emma away from the drinking fountain, passed the elevator.  Emma has never explored those particular buttons before.  She decided to see what would happen if she pressed one. Imagine her delight when a light turned on!  Then, after a while, the elevator door opened.  The chip-providing children and their mother and I stood back for awhile and watched to see what Emma would do.  We all knew that Emma doesn't like to step across thresholds between one surface and another (because that's common knowledge, right?), so I wanted to know if that fear would be enough to keep her out of the elevator.  She stood with her hand on the doorway, trying to decide if her foot could step on to the new surface.  She stepped a toe in a few times.  The youngest little guy started saying, "Emma!  No go ON!"  He was very concerned about his friend.  We assured him that we wouldn't let her get stuck in the elevator and watched, waiting to see if Emma's bravery would carry her across that threshold.  Two more tries.  Finally, yes, Emma was able to get on the elevator!



  • Someone made a comment about how great Emma is doing lately and I burst out singing "A Whole New World!" from Aladdin.  Because if you can't handle that I randomly burst into song during our conversations, then we can't be friends :)



  • Emma needed a moment by herself at this point, to process the fact that her elevator plans had been foiled.  She walked up to a stone-textured column and tilted her head back and forth, watching the patterns in the stone change.  Our pastor walked up and gave me a hug and then made a joke about Emma making friends with "one of the pillars of the church" and I laughed.  If you love Emma, you are allowed to joke about it when she has her "I just need to go over here and talk to this wall" moments.  



  • Finally, it was time to take Emma to her class.  A very kind adult helps Emma one-on-one in her preschool class on Wednesday nights.  Emma was pretty tired after all her adventures, and needed some time to just lie down for a bit.  Her helper asked me what she should do, which I appreciated, but mostly I just appreciated that, even though Emma's behavior is not "normal," she has people who love her who are going to stick with her through the weirdness to help her be a part of the class. 


Everything and nothing about that evening was amazing.  These 'snapshot' moments come together as a beautiful collage, painting a picture of a place full of every-day flawed people being used by God.  If we are the body of Christ, we take seriously the fact that some of us are 'hands' and some of us are 'ears' and some of us are 'feet'.  And Paul wrote, "the hand can't say to the foot, 'I don't need you!'"  Emma needs us, and we all need her, too.  She marches around her world, changing it by her presence, and making us all better people as she goes.

Monday, October 13, 2014

Dear 22-year-old self, someday you will be intensely proud of this ...

So I'm in a waiting room with my two wonderful children.  It's a waiting room we have been in many times.

Emma finds the restroom and grabs my hand to bring me to the sink to wash her hands.  She loves washing her hands (read: playing in the bubbles).  We wash her hands and I help her down off the stool, where she discovers, to her immense delight, that she is now tall enough to reach the light switch.  I recognize the opportunity to practice her new "on" and "off" sign language, so she gets to play with the light switch a couple of times.

Then I tell her it's time to be all done.

We walk back out to the waiting room and I close the door.

She walks back over to the door and tries to open it.  She fails.

She signs to me: "Open!"

I sign back: "No.  All done."

She is not giving up.  She walks over to me and tries to drag me to the door.  I sign: "Stop.  No"

She stops, but is still not giving up.  She looks back at the restroom door, and thinks for a moment about how to get back into that magical place with BOTH a light switch AND a bubbly water table to play in.

She looks at me intently and signs "potty"

She then summons all her strength and concentration ... and manages the most hysterical TOOT I have ever heard in my life.

Triumph!  With a huge smile, she signs "potty" again, this time grabbing my hand, which is her way of communicating that she "NEEDS" a diaper change.

I sigh.  I concede defeat.  To the sound of her glorious laughter, I pretend to change the not-so-dirty diaper, and then lift her back down to the floor.  With a strut that would put the winner of any professional sport to shame, she swaggers her sassy self right on over to the sink.  She turns around, grins, and signs: "Help.  Up"

Because now we need to wash our hands

And then we'll have to turn off the light.

Emma = 1    Mommy = 0