Sometimes, I lay awake at night, when everyone is asleep, and I stare at Red. I touch her face, hold her hand and try to consolidate the sensation of what it’s like to feel her — so that my memory of this is felt, not just remembered.
My fear of losing her makes me do this and I don’t mind letting myself go there, anymore. As uncomfortable as it makes others; as faux pas as it is to talk about this fear, I find private moments to let myself feel it, when we are alone together. Unabashed and unedited, I let myself sit with the thought of losing her to this disease.
Eventually, I move my hands to where I imagine her kidney’s to be. I think of them inside her, slowly failing her body and, in a moment I’ve never let anyone see, I pretend my hands can channel some sort of healing power. I place them firmly on her bare skin; I hover them just above her and we lay like this, for hours during the night.
Nights like these aren’t meant for sleeping.
When morning rolls in through the windows and Red opens her face to the world I am grateful for having seen the exact moment of waking life. This moment, when you see the exact second your child awakens to new life for a new day, is my version of spirituality. On bartering a new day with his daughter, Steele (2000) writes:
When a child has a progressive disease, the care she needs simply to stay alive may have the grimly ironic effect of buying her the time for her symptoms to get worse.
This is a hard reality for parents with children diagnosed with progressive diseases.
Red will never be as healthy as she was yesterday. Kidney transplantation is not a cure; it’s considered palliative. Red’s future self is indebted to her 2 and a half year old self today, as it were, the healthiest and best days of her life. My job as her parent, is to pragmatically and strategically, get her through end stage renal disease, multiple transplantations and the Howard Hughes of childhoods, staving off threatening infections.
But until then, I can pretend my hands can heal her. I can look at her during the night and etch the feeling of her body onto my soul so I can recall that sensorial memory if I were to lose her.
I can take lead, from my 3.5 year old daughter who said:
Mummy, if I had magic in my hands like Elsa, I could save her
Until the hard work of parenting Red into the twilight of her disease, I can side step grief for the odd moment, to pretend, like my 3.5 year old daughter does, that my hands can save her.