Her Special Brand of Sunshine

[caption id="attachment_3362" align="alignright" width="300" caption="Ellie finds her fingers."][/caption]

Throughout this morning, Ellie has had some restless moments, a little bit more difficulty breathing.  Our ultimate goal is to keep her as comfortable as possible.  She closes her eyes for awhile then they pop back open.  Earlier, my mouth suddenly tasted like salt and, again, I wondered if that was me or if it was what Ellie was experiencing.  I mean it is possible that my mom or Betsy put salt in my tea as a joke, but I seriously doubt it.  Then Thom said he had had some moments of extreme head pain, which never happens to him.  I had to wonder if he was picking up some of Ellie's sensations.  I know it sounds wacky.  But still.  Betsy shared that the day Ellie was diagnosed, she had an extreme headache which was strange because she also never gets headaches.  When I shared some of the wange (weird and strange) sensations I was having yesterday, my grabulous friend, Amy texted to say how she was so glad how connected we are feeling with Ellie right now.  I thought that summed it up perfectly.

A beautiful card was on our front porch this morning.  It was delivered by one of Ellie's teacher's aids from this year.  What I liked most about him was how gentle and kind he was.  From this space, he was able to get Ellie to do things that I am not sure anyone else could have.  For example, the day I came to volunteer for the Marquette Mile, he told me that Ellie wanted to continue writing (something she'd always hated doing) rather than walk.  Whatever he is getting paid, it is not enough.

This card reminded me of Ellie's oh so very colorful hats.

This card reminded of Ellie's oh so very colorful use of the English language.

This card reminded me of the sunshine that always shown through for Ellie.   The sunshine that would always come to a halt as soon as I suggested we do some schoolwork:

Walking 500 steps in a day.

Learning to write numbers.

Remembering what day, date, year, and month it was.

Pretty soon though the sunshine would return, never having disappeared altogether.  "Oh Oooooooooooooaaaaaaaaaakkkyyy.  Let's just do this thing", Ellie would say.  We would push and pull until the assignment was over.  "Now can we count dots"?  Which is all Ellie wanted to do in the first place.  She was comfortable in the world of dots.  And she could count forever.  If it were possible to get to a bazillion, she would have gone there.

I think about Ellie often.  She made me laugh.  She showed me how to live life fully, even through adversity.  Although if there was adversity in Ellie's life she never let on.  She was an inspiration.  These are not just idle words.  She truly was.  Her special brand of sunshine still shines through.  I miss her.