Bittersweet

This morning, my little (or not so little) Zac climbed into bed with me with his book under one arm and his brother's new harmonica in the other. We snuggled under the "covies" as we call them, got comfortable and read Brown Bear, Brown Bear, What do You See? I read it once, slowly, wanting the moment with him to last as long as possible. Then we read it again. He was done after the second round so he got off the bed, put his book back underneath one arm and harmonica in the other. As he started to leave my room, he stopped at the foot of my bed and played me a little tune. I smiled big at him which in turn made him smile. I loved that all I had to do was smile at him and it made him happy.

Then it hit me. This child of mine will not always be able to see my face. And I wondered: When he does loose his sight, what vision in his head, what memory of his mother's face will he keep?

At first, I thought to myself that I always want him to see me smiling. I want him to remember the happy face of his mother. Yeah that thought faded rather quickly. For me to be smiling 100% of the time would not only mean burning cheeks, it would be a farce. Besides, I don't want my child to remember a robot. I'm human, I have feelings and experience a variety of emotions. And I don't care if he remembers a face with crows feet or forehead wrinkles or a face without make-up either.

I want Zac to remember my face and how my eyes light up when I see him, his brother and his father; how my brow furrows slightly when I'm questioning something; the sorrow in my expression when I hear about death or destruction; the shape of my mouth when I laugh; the tears in my eyes... I want Zac to think of my face and internalize his mother's love.



I do hope for a cure for RP and in time for my son to benefit from it. Yet at the same time, I have to accept what reality might be for Zac. And it's bittersweet.