“You have not walked in my footsteps, danced in my shoes, or lived in my world. Do not judge me, point your fingers at me, or become experts on my life.” Kate Baker

I have a warm memory of dancing on my dad’s feet as a little girl. I would place my tiptoes on his shiny black shoes and he would sway, step and glide around the kitchen. Before long I would begin to giggle in expectation of what would happen next. Inevitably, he would take long exaggerated strides far too big for my short legs and I would be left gripping on to his hands with my toes desperately trying to seek out his feet below me. This is the closest I ever got to walking in someone’s footsteps and it is a feeble attempt.

Shining a light on my life

This blog is all about shining a light on my life and showing it for what it is. Not the glossy Facebook impression of a perfectly painted exterior and immaculate garden, but the reality when I haven’t cleaned the loo or made my bed.
So I ask you to stop reading if, in the words of Jack Nicholson,

“You can’t handle the truth.”

Life for me involves getting up every couple of hours in the night to care for my son. It is impossible to tell if he gets disturbed because of pain, seizure, reflux or mild discomfort, and it isn’t likely to get better as he gets older. Through the day I draw up more than twenty syringes of medication to be administered eight times in a twenty-four hour period and I am required to lift his 27kg body more than a dozen times in a day. Add in the feeds via the tube in his stomach, and every hour there is something else that needs to be done.

When the day is consumed by tasks and responsibilities there is little space for light. Emotional reflection and perspective goes out the window. I shouldn’t, however, have to justify why it became too much, as for everyone breaking point comes at a different time.

The truth was it got to the stage that I was no longer coping. I managed to keep going but inside I was becoming increasing drained by physical and emotion fatigue.

Does that mean I failed to love or value my son?

Of course not.

It is profoundly understood in our home that worth is not tied up in achievement. My youngest son is not loved more because he achieves well at school and my eldest isn’t valued less for what he can’t do. In the same way that value isn’t related to achievement, neither can the extent of my love be measured by my ability to care and carry on.

A diamond’s value is not diminished by the sweat, strife and struggle experienced by the miner excavating it; in fact they wouldn’t even bother if it wasn’t considered so precious and unique.P1030349

So why am I prepared to be so vulnerable and open to criticism?
Not long ago a local mother and her son, with special needs, were found dead in their car. It seems she had decided to take both their lives. She was living in a dark world straining for light. I worry that our current state of fearing other people’s opinion and putting on a brave face creates isolation and desperation. I feel there may be benefit in shining a light on my life so that others may know what I have to face before stepping out the door. Just maybe others will be comforted to know that they are not alone in their struggles.

So my advice to anyone who is struggling with holding it all together:

1. Find someone you can trust and share with them the truth of your life and how you feel.

I have discovered there are two types of people in this world. There are those that think they understand but don’t and give advice anyway; and there are those that don’t understand and are prepared to listen. Seek out the latter. If there isn’t anyone, write it down and, if you need to, burn it afterwards.

2. Get help.

Vulnerability is hard and taking help because you can’t do it on your own isn’t easy. For me, it took shining a light onto my own weariness and grief before I could accept more help. Not coping is not the same as being a bad parent and it doesn’t mean you love your children less. The guilt of not being self-sufficient may still niggle but the impact of living beyond simply coping is incredible. Most importantly life begins to have the potential for whimsically dancing around the kitchen with your kids.

The response to my last blog was not what I expected. I have never been told what a great mum I am by so many people I love and respect. The best reaction by far came when both my older brothers immediately came to my defence. I felt as though I was back in school with my big bro’s rising up to protect me against the playground bully. I have savoured those feelings all week.

OLYMPUS DIGITAL CAMERAMy prayer for this blog is that it may help others. As I shine a light into the dark areas of my life and thoughts it may help others who feel overstretched and misunderstood not feel so alone. I also hope that the people who love families with a severe and complex disability may have a greater insight into the world they live in, enabling them to love them better.

For me, no number of hits or comments on the blog, whether good or bad, will replace the real life I live and the people I’m blessed to share it with.