Healing Hands

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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

 

Why not.

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.

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One thought on “Healing Hands

  1. It’s so hard to know that you can’t heal your child. Everything inside us, as mothers, screams out to heal and protect our children, no matter the cost. Having to come to terms with their impending death is so contrary to the natural order of things. Parents just aren’t supposed to outlive their children. The quote from Steele really hit home for me. We were told, when my oldest son was diagnosed, that most parents of sons with his disease had a hard time telling their son ‘no’, and so the boys ended up becoming very overweight. Which of course, can lead to so many more problems, that their young and already weak bodies just aren’t equipped to handle. So we kept a strict watch on his diet. We made a list of the things we’d say ‘no’ to, and another list of things we wouldn’t limit him on. We did this, in the hopes that he would live longer, if he wasn’t overweight. But perhaps we’ve only bought him extra time to suffer until his lungs and/or heart stop working. I don’t want my son to die, but neither do I want his life to be filled with suffering. I suppose my one luxury, is that he’s now a legal adult, and he has the right to decide how he wants to live the remainder of his life, and to determine the nature of his death. I know I’m going to have to squash every urge and instinct to keep him alive as long as possible, and give into his wants and needs for the way he wants to his life to come to a close. I’ve often wished that I could take his place. I would do it without hesitation, just to know that he would live a full and physically normal life. You will be in my thoughts, and I am willing to be a sounding board, if ever you find yourself needing one.

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