Not as we know it: Tips for parenting while ill

parenting while ill

Back when I was a classroom teacher, the ‘StarTrekkin’ song was doing the rounds.  My class did a little dance number for the end of year show.  34 little aliens and star trekkies stomping the boards.  There is a line spoken to Captain Kirk mixed into the track, from the original series.  Was it Scottie talking? 
“It’s Life, Jim. But Not as we know it”

It’s a line that frequently trips through my mind when I survey my current life. I am one of the people in our community who deals with parenting while ill.  I don’t mean we suck it up and continue parenting through a family bout of rotavirus, or an episode of flu, having done both I know how hard that can be.  I mean parenting while always sick. For me, it’s a progressive neurological disorder. For some of us, it is a chronic illness, for others a progressive or degenerative situation, or perhaps a remitting/relapsing condition.  Maybe there has been a terminal diagnosis, or some really frightening short term treatment prospects, or perhaps it is mental illness that has caused the wheels to fall off. Being long-term sick and a parent can be a terrifying and difficult thing.  It can also be heartening, rewarding and wonderful.  We get to see our kids be extraordinary people all the time.

You may not even know that the mum in front of you at school pick up is ill.  Or those parents who never seem to be at any of the events are not absent from social avoidance.  Parenting while sick is no picnic.  Let’s face it, parenting at all is no picnic!  The challenges all parents face would make mere mortals quake in their boots.  Parents everywhere make hard decisions every day that have the potential to have lifelong impact on the characters of our children. But we make them, we do our best, we love with that fierce, all encompassing love that only exists between parent and child.  Parents with illness are just like any parent; they are just managing all that in the context of ever-present medical issues. One thing is clear, no ill parent ever chose to land on an alien planet and embark on the adventure of dealing with parenting while sick. It’s not a choice, it’s a fact of life.  For more parents out there than you imagine.

parenting while ill

Look beyond our failings

How haphazardly our children are dressed, how slap dash their lunchbox contents are, how frequently they are the ones who have forgotten that important thing at school are not reflections on how much we care. Sometimes, for an ill parent, other things have had to take precedence over those things.  Sometimes, our medication side effects make it harder to remember everything.  Our ability to mobilise might make it harder to control the myriad of things that need sorting in a family home. There is a big disconnect between what we want things to be like and how they are. We deal with it.  Maybe if others could try to drop the judgements. A gentle reminder text before mufti day.  An offer of lunchbox baking for the freezer. A kind and reassuring word to our children when they are behind the eight ball.  These things would all go a long way for an ill parent.

Notice what our kids can do

I know my household is not the only one where kids are helping their parents. All over the world there are millions of children who fulfil the role of carer at some point in their day.  As I lie here in my bed, typing this piece, I have just been delivered tea and toast made for me by my nine year old daughter.  Both of my children are kind, caring, helpful people.  They have empathy beyond their years and the gift of compassion.  They may not be musical prodigies or basic facts champions, but they deserve recognition for the wonderful job they do in our family.  You might not see it in them, but you can rest assured that if a parent is ill, that child lives a different kind of childhood to that of your own children. Sometimes, carer kids need time out from responsibility, so you might not see them putting their hands up for leadership roles at school.  They might act out sometimes. Please try to understand why.  Having a sick parent is a big burden for a child. Notice them for their brilliance and extend them a hand of caring.  Understand that because we often can’t ask children over for a playdate, our own are often not invited.  Something in that great reciprocal roundabout spins us clear off the merry go round.

Make like the Village People

It is true that it takes a village to raise a child, but in our modern society, families are frequently disconnected from the wider community.  Not just families dealing with illness, any family can suffer isolation.  Geographically distant extended family, lack of transport, any manner of factors can foster a situation that reduces the family’s connection with others.  Consider the parents in your circle.  Your kid’s class at school, at the extra-curricular activities.  Are you in a position to offer carpooling? Is there something you are already doing that could help the families around you? We manage after-school activities with a finely balanced combination of arrangements with wonderful friends.  I offer what I can in return.  One girl’s mum takes our two to swimming in exchange for an afternoon of after-school-care for her daughter.  It works for both of us and just took a call to the pool to arrange compatible class times.  The Mum understands my limitations and her daughter gets along here like she is one of us.

Say something

If you know an ill parent, it’s better to say something than nothing at all.  Say hello. Talk normally about normal things. Ask if you want to, but try not to offer advice or comparisons; remember that ‘my cousin Sarah’s mother had what you have and she’s fine now’ is only comforting to you.  Rather than sympathy and suggestions, try solidarity.  It’s a far more empowering exhange. Make a phone call. Get alongside us and try to understand the complexities of our lives.  A smile.  Kindness towards our children.  These are the ways you can help a person who is parenting while ill.

Captain Kirk and Spock have shown us, way back in our own childhood years; we don’t have to come from the same planet to find common ground.  Our parenting hearts understand already; we all share the same hopes and fears for our children.

What would you worry about the most if you became sick?

How would you mitigate the impact of that on your children?

What would you hope for in your community?

Rachel Faith Cox

Rachel Cox is an Auckland wife and mother. She has two of her own children ...and two on loan from other mothers. She is a writer and blogger, an ex-teacher and a big believer that information is power. Her favourite topics to write about are all aspects of life with Pandysautonomia, parenting issues, chronic and invisible illness and disability, accessibility and the wonder of life in general. She blogs at www.rachelfaithcox.com

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