There seems to be a shift in the air. Something is going on; developing. The awareness of what is really happening is decidedly coming to the forefront. There is no stopping it. There are no aversion tactics. There is no way around it.
The other morning Lindsay and I listened to Ava sing to Ella. Curled up on Ella's bed early in the morn, Ava sang a tune to Ella that reflects one of her deepest desires. The words: simple. The melody: pure. The meaning: eternal.
"Goodbye SMA, bye, bye, bye SMA. Goodbye SMA, bye, bye, bye SMA".
The exchanged glances that Lindsay and I shared were ones of "how cute is that?" coupled with "the time is coming for an explanation..."
Ella has been under the impression that her inability to walk, run, jump, or even stand is directly related to her age. With her whole heart, as of recent, she believes that when she is older she will indeed do these things. She is only now beginning to emerge from the sheltered shell she once lived in; and with eyes wide open she has started to realize that she already is older.
When she sees other children about her age she inquires whether or not they are "babies". When she sees a baby, she confirms that it is, in fact, a baby. She is beginning to compare herself to her same aged peers while out in public. Not only comparing herself, but making the connection between what they can do and what she cannot. Her face, oftentimes, is one of deep wonder, questioning, and the attempt to make sense out of what is going on with her self.
While carrying her to the car one morning she asked me if she would "walk when she is no longer a baby."
I told her that, "She is isn't a baby anymore...that she's a big girl."
"I am?" she replied.
"Yes, you are."
"Will I walk then?" was the next words uttered from her mouth.
"When the doctors find a way to fix the SMA, then you can walk. It's not your age, it's the SMA that makes you not walk." I replied.
"The SMA?" she repeated, "I don't like the SMA.
"Neither do I." I said.
The hope that surrounds the idea that one day they will find treatments or a cure for this debilitating, awful disease that has claimed the lives of thousands of children and made life extremely difficult for countless others and their families, is a hope that seeks to fulfill the promise that Ava sings about. The promise that one day we will indeed say, "Goodbye SMA".
Hang in there Ella.
