Guest Post: My mother’s hands

This guest post was written by one of my dearest friends KVN. I absolutely adore her and can’t imagine my life without her. This post is about her parenting journey with her daughter. KVN is an incredible mother – this post will break your heart, but this kind of honesty is so needed. We need to share these stories and make sure parents know they’re not alone. Arohanui to all of the parents out there who know this pain.

I am sitting in a blue, vinyl lazyboy staring at my dry, cracked hands.  The lazyboy is set upon a bulky wooden frame, set upon discordant castor wheels.  The lever propels the footrest up at a badly lopsided angle and I cannot rest my legs without them slipping off the side.  I am sitting in this lazyboy with my dry, cracked hands on my knees.  These look like the hands of someone much older, who has worked too hard.  They look like my mum’s hands.  I notice all of these things.

The heavily bleached blankets that bandage my child in to the bed next to me fall on the floor.  She squirms and I launch myself up and pump sanitizer all over my hands and arms.  I rub the excess on my neck.  I pick up my sweaty, weak, groaning child and climb back into the lazyboy where she nestles under my chin, my hands smoothing her hair.

I think about how easy this is now.  The familiarity of being in hospital.  The jokes we always make with the nurses about how it’s like being on holiday at a resort, every time they ask us if we need anything.  Room-service with a smile.  And canullas and respiration monitors and vials and vials of blood.  I think about how easy the build up is.  How the previous few nights at home I’ve laid awake for hours with a pain building in my chest, waiting for the fever or rash or cough that will send us to the hospital.  In spite of my anxiety I have performed myself calmly, I have gone running each day, I have eaten well-balanced meals and looked after myself, I have not yelled or sworn or gone awol.  These are all healthy habits my doctor informs me, each time he writes out my quarterly prescription for antidepressants.

I notice this calm too.  When my child cries I wait a moment too long.  It is during this pause when I jump start myself, becoming warm and loving and strong.  The truth is during times like this I am numb.  I have compartmentalised my child’s illness so that I can cope.  I file my knowledge about this chronic disease carefully in my memory; well filed so that I can access it when I need to cite studies and peer reviewed articles, but deep enough so that I can forget it’s existence day to day.  I joke with the registrars and make cakes for our consultants.  I celebrate Rare Disease Day as if it’s something to celebrate.  I heartily join in with friends, making lifelong plans for our children’s futures, because the alternative is too horrible.  When people ask about her diagnosis I give them the sanitized version about how things will definitely get easier.  People don’t want to hear about sickness, especially not unsolvable sickness in children.  What they want is inspiration.

The issue of my hands.  My mum, who has dry, cracked hands of her own, tells me I should moisturise, moisturise, moisturise.  She doesn’t do this herself, because she’s too busy taking care of her own grownup children and other people’s children too.  The day I told her about the diagnosis she cried into the phone, and was on a plane towards us the next day.  She has raised my chronically ill sister, and her grief that I would now have to go through what she goes through is something else for us both to compartmentalize.  She is one person who understands, and one person it is too painful to talk to about this.  My mum is calm like me.

I don’t have time to moisturise my hands.  Even when I’m sitting alone in that sticky, wobbly chair I am busy.  I am busy thinking the worst thoughts, practicing not falling apart if they happen.  I think the best thoughts too, for balance, I tell myself.  I coach myself through them, encouraging and cheering, because often it feels most terrifying to hope and dream.