Caring for Ella has a built in dichotomy, quite separate from the missing brain hemisphere.
Within Ella’s sphere we have nothing but excitement over her achievements, her joy and the progress she makes in almost all aspects of her life. Measuring this against herself it is always surprising to see what she is doing now. Friends who haven’t seen her in a while always comment how far she has come.
The world however is not Ella’s sphere. Even though ‘everyone is different’ there are certain absolutes. Measuring Ella there gives very different results. As a parent it is always difficult to face that, no matter how excited you are for what Ella is achieving in her own scale. The world however doesn’t care about such things. Kids point at Ella and are taken aback. She cannot do what others can and requires special attention and a different way of doing things for nearly everything.
We are always on her side, in her sphere, accommodating, making it possible, being the ‘interpreters’ of the real world to Ella and of Ella to the real world. You just worry if there will always be someone like that around to perform those functions.
Most of my nights end with a dream with some scenario or another where the answer is … No.