Sitting here, in the wee hours of the early morning, the house lay quiet with the exception of the occasional call from Ella to be turned or one of her machines going off for one reason or another.        The days, however, are a different story.  The flurry of activity is no flurry at all.  It's more like a whirlwind.  Our house provides ample space for the kids to "run and roll" at near top speeds, chasing one another in endless circles, loops, and figure-eights throughout the first floor.  Furniture safely sits idle, never in the way, walls and corners are free from destruction caused by an errant wheelchair maneuver.   Even Sasa seems to enjoy watching (and sometimes joining in) the fun of "run and roll".       As Ella grows so do her needs.  They are evolving though.  Her basic needs remain the same...assistance with using the washroom, getting dressed, bathing, overni...

Happy 4th Birthday Ella!!

I overheard a conversation,      the turns it took silenced me. A mother talking to her child,      trying to make her see. Why does she get the things she does?,      pleaded the innocent child. She sought an answer,      and one more than just 'because'. The mother sternly spelled it out,      the trials the other faces. How she can't do many things,      how she cannot go many places. The conversation quickly turned,      to a reality as I let out a heavy sigh. The mother with a chill in her voice,      said SMA will make her die. The child stood erect and tall,      her eyes fixed and steady. The mother ask for understanding,      the child answered when ready. The child's voice spoke with a quiver,      her hair was all a m...

Yesterday was a very special day for Ella (and our entire family). But first, let's back up.  Several months ago, I received a call from one of Ava's friend's mom, Dina.  Dina told me that she hoped I didn't mind, but she nominated Ella for a room makeover through a national organization called Special Spaces, and they picked Ella!  I was so surprised!  Definitely not a call I was expecting.  Dina was so inspired by Ella and her story, so she wanted to do something nice for her/our family :) At the time that Ella was picked for a room makeover, we were still in our old house so we wanted to wait until we moved to have the makeover happen.  Of course Special Spaces agreed. Once we were in our new house, the Special Spaces team (led by Kelly Knox) came to meet Ella and our family and to see the room.  They wanted to know what we'd like changed and any ideas that we might have for the new room.   We discussed that we'd really like for Ella's m...

Yesterda