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, overnight assistance, lifting and moving certain objects, etc. Other needs, however, are forming.
Her need for understanding her disability is coming forth. She talks about her SMA more often. She even role plays with her dolls and stuffed animals with SMA being a central theme. She is beginning to differentiate between what she does and what others do as a function of the SMA (going to therapy, doctors, her braces, etc.). She is realizing some of her physical limitations.
In fact, all three kids are crossing a bridge of understanding SMA. They are asking more questions, developing skills to compensate and personal opinions of the disease itself. They look forward to the day when the "SMA is gone"...as do we all.
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, overnight assistance, lifting and moving certain objects, etc. Other needs, however, are forming.
Her need for understanding her disability is coming forth. She talks about her SMA more often. She even role plays with her dolls and stuffed animals with SMA being a central theme. She is beginning to differentiate between what she does and what others do as a function of the SMA (going to therapy, doctors, her braces, etc.). She is realizing some of her physical limitations.
In fact, all three kids are crossing a bridge of understanding SMA. They are asking more questions, developing skills to compensate and personal opinions of the disease itself. They look forward to the day when the "SMA is gone"...as do we all.
"Her Hope" published Sept, 2012.
