To Love

The tiredness that overtakes us continues to surprise us, we comment on it every time. Every time she has a phase like the one right now. My shoulders go into spasm, a deep pain with sharp edges. I can feel now the map of stress, our small, familial post traumatic stress disorder.

We, Craig and I, have this war, these maps, these fears, together. A tiny war for two. The words we use to describe the battle of Colby and her brain: beat up, battered, destroyed, wasted, worn out, zoned, gone. This is our little girl. The list of words, looking at them, not just saying them, our sadness and tiredness makes sense. We use the words in an attempt to acknowledge the severity, not to define her but to define the events, the repercussions: her state, not her being.

I start with a general sadness, quickly riffling through the day’s plans to see what will need changing, modifying. Then, without fail, I turn to smiling, happiness, positive meditations and visualizations. I feel like it might help her, to see the radiant love that I feel for her when she comes through the seizure. Then if they continue, as they have lately, I feel a greater sadness, it arrives slowly. The sadness is like watching a set of headlights appear over the horizon on a straight, flat desert road. They are tiny at first, but they steadily approach, and then suddenly they are upon you, blinding you, filling your vision completely. That is how the sadness is. And it might swerve off and disappear as quickly as it arrived. But while it is here, it is all I can see.

I think because Colby becomes so very remote - we wonder aloud: where does she go? - I let myself also go down, descend or ascend into emotions, reactions, far beyond the initial reaction of expressing and giving love. I don’t think the love goes anywhere, but I do not demand of myself that I stay in the calm, smiling phase. I let the rockier thoughts have a voice.

Today I held her in the bath and I wondered who else in her life might hold her on a day like today. Having a child who will always be defenseless is to always have a child. We will never put her through college and say we did the best we could. She, her body, her seizures, her precious life, will always be our responsibility. I do not try and conceive of a literal plan, in the bath, her passed out against me, long hair curling in the water like a mermaid.

I try and conceive of an emotional path. I send out prayers, urgent notes, tied to arrows that I shoot from my heart and into the heavens, “Let the love of our hearts find a community of care that will always surround and protect Colby Rose.” As I lay there breathing, I shoot these arrows, over and over, enough for every star in the sky. Urgent, vigilant, magical thinking. For our girl is a mystery, so I reason and I hope that there must be magic to help us find our way. Help us find our way from the deep wells of worry, from the evil things people do. Let her life be safety and joy, let it be what every child deserves, forever.