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Stephanie Nimmo: “Sometimes Pollyanna can take a hike”

Stephanie Nimmo is a mum of four, caring for her two sons with autism along with her ten-year-old daughter Daisy who has a rare genetic disorder and needs full-time care. She blogs about her experiences at Was this in the plan?.

Here she blogs about the frustrations of having to constantly look on the bright side.

pollyannaPollyanna is a character from a children's book who gets through her misfortunes by playing the "Glad Game" – always finding the positive in everything in life and finding the glad in every situation.

99% of the time I am a Pollyanna. In fact, my ability to see the positive in every situation is irritating even to me at times.

However for the remaining 1% of the time I want to strangle Pollyanna. She can take a running jump, because really at times what is there to be glad about?

We parents of children who were born to be different in some way are always being told we are amazing, we are so strong, we are told that you couldn't do what we do – well guess what? Sometimes we want to turn around and instead of smiling angelically and saying something like “Well you just have to get on with it, they are my child no matter what” we want to tell you “It sucks, I hate it and quite frankly I want to run away!”

Because it is rubbish at times. The times when you don't see us, the times when in the middle of the night I am struggling with my increasingly myopic vision to read whether I have a bottle of ketamine or morphine in my hand, working out which would work best as my child screams in agony.

Or when you've just changed the bed for the millionth time and then her stoma bag leaks all over it.

Or when she hits you as you lean forward to kiss her goodnight because the seizure activity going on in her brain has made her confused.

Or when your other children are on the receiving end of your stress and don't deserve to be shouted at for the smallest of misdemeanours.

Or the nurse agency messes up the care rota so by day three of being awake most of the night you are incapable of stringing a sentence together let alone care for four children.

Stephanie and Daisy

All photos from Was this in the plan?.

There are days when the Glad Game just does not work for me. How can I be glad when my work load just goes up and up, when I see constant deterioration in my child's health, where her bedroom is looking more and more like a hospital room every day. When every hard won battle for independence and time off gets taken away by yet another medical curve ball.

This is the reality of life with a child like mine.

I have to let strangers into my home - constantly. My life is on view to people who I barely know but now have a professional interest in knowing about me and my family.

I have to be nice to people I don't like.

I have to be grateful, even when I don't feel it.

I worry that I am going to make a mistake that will kill my child. For goodness sake I have no medical training, I have a degree in Social Anthropology and a Master's in Marketing. That is no qualification for accessing a central line, administering intravenous drugs, setting up drips, administering heavy duty pain relief and anti-seizure drugs.

I worry about the future – as in tomorrow as well as next week, next year and the next 10 years.  We weren't supposed to get to this point.

I worry that I am not happy enough.

I worry that I am too happy and not aware of the reality of my life.

I dare not think about the reality of my life – it scares me so much.

I envy parents whose children have less complex needs than my daughter. How crazy is this when you begin to wish that she just had one thing, one system that needed care. I guess my daughter's complexity can be measured in the number of Facebook support groups I am now a member of; Costello Syndrome, Intestinal Pseudo Obstruction, Mitrofanoff support, epilepsy, reflux, TPN...

When I go into shops and people ask me "How was your day?" I nod and say “Fine thanks”. I want to say "You just don't want to know, it will make you feel so depressed."

If you know someone like me with a child with complex needs please bear these things in mind:

Sometimes we really want to feel sorry for ourselves and wallow in it for a bit. We are not saints.

We don't always enjoy this and we don't have to be happy all the time.

Sometimes we are moody – it’s nothing you have done wrong.

We are envious of you. You can be spontaneous, you don't have to remortgage your house to get a babysitter so that you can sit and have an argument with your husband in a pub.

You have very high odds that your children will grow up healthy, hit all their milestones and leave home. I'm still changing nappies and singing along to the theme tune of Fireman Sam.

We don't want to talk about our children all the time. We are more than parents of children with special needs.

Sometimes we find it hard to listen to your stories of holidays and nights out when we would love the chance just to be on our own for 24 hours.

Sometimes we lose at the Glad Game.

But because we have learnt to be strong and because we have no other choice it's only for 1% of the time.

Thank you for allowing me to get this off my chest. Normal Pollyanna service will resume in the next post.

Stephanie and family

  • This blog post was originally posted in July 2013. To read Stephanie’s original post in full, visit Was this in the plan?

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