I’ve held my baby boy Jarvis in my arms now for nearly as long as I held him inside me.
Alongside the exhaustion of sleep deprivation and muscle ache from climbing the steep learning curve of mothering, I have been lugging a bag of emotions that weigh heavy on my shoulders and threaten to spill out at the most unlikely of places.
Anger, guilt, resentment, fear, worry and self-pity. I feel them all regularly and intensely. Even in the moments of sheer joy, they are still there. That sheer-shot of guilt from the corner of my beautiful boy’s smile.
My baby boy has facial nerve palsy. Present since birth, it means the right side of his face has little movement. His right eye doesn’t blink, his right brow doesn’t furrow and the right side of his mouth doesn’t open as wide as his left. It was first thought it was caused by pressure during birth and that it would resolve, but now it seems it is here to stay.
I really can’t imagine him any other way, but at times I ache for what he will never know, feel responsible for what he has and wonder if a choice I made resulted in this. The fact is, I will never know. Facial palsy, I have since discovered, is just one of those things. One of those things I never knew about, and most people don’t ever know about. While coming to terms with this, I remind myself it’s not that bad. There are worse afflictions and worse fates. He is a healthy and happy boy and will grow into a healthy and happy adult but I know that he faces challenges ahead. The challenge of growing up a little different. And as a family we face challenges, of arming him with a healthy self-esteem that will shield him from taunts, an openness to respond to people’s curiosity and a generosity of spirit to accept others as they are.
But some days I don’t feel up to the task. I withdraw. I get annoyed when well-meaning people make comments about his face not ‘looking that bad’ as I demure and agree. I hold back from telling a person not to touch his face like that, as they push his unblemished forehead into a frown for him. I just smile as another shop assistant laughs and says that he winked at them. But deep down I get that feeling again, a deep primal protectiveness laced with all those negative emotions that I turn on myself. It feels heavy.
But then how quickly lightness descends, a stranger says “what a beautiful boy” and I beam for him. He fixes me with a gaze, blue eyes shining with all the trust in the world and in that moment I know that he’ll be okay. That we’ll be okay. My boy with the crooked smile and me.