All of my past and future blogs are now posted on my new website Born at the Right Time.
"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.
This blog is all about showing the truth of my life. 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 eldest 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 of 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.
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. 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
others knowing what I have to face before stepping out of my door wearing a
smile, and others may 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.
(Don’t do this on the internet – some people will not
understand).
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 mum and doesn’t mean you love your kids 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.
My 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.
