I have decided to write this message to the medical world after years and years of constantly feeling that I’m banging my head against a brick wall, to have my daughter’s health concerns even recognised.
I know full well I’m not alone. – Sharon
When we walk into your room,
please at least have the decency
to look at us not above, at a screen.
The side of your head isn’t a
comforting sight to a worried mum.
If you did take the time to look at
me you would notice the constant
dark circles around my eyes,
like a tally chart from sleepless
nights born from needing to stay
alert and paralysing fear.
My bloodshot eyes from countless
tears sobbed into pillows where
I can muffle the cry.
So I don’t wake up the household.
When you glance at my child,
what do you really see? A child that’s
having fun skiving school?
If this enters your mind then take
a closer look.
Her eyes are brimming with
bewilderment and despair, as she
tries to make sense of her weak
body that’s seems to just want
to attack her at every level, and
takes such pleasure at limiting her
precious childhood joy in anyway
Please believe me, your office
although how smart the decor, is
not where any of us wants to be.
As much as we are your last
thought, you would be ours too
if life was fair.
Please understand that I rather
sit in the reception for another
twenty minutes to be greeted
with the words
“Sorry I’m late, I needed to look
at your daughters file and didn’t
realise how complicated it is.”
I can count on one hand after
seeing so many Doctors how
many times those words were
spoken to me and made me
feel relief inside.
They scream out to your
child matters to me! I respect
the rocky journey you are on.
Then the empty words, ‘What
can I do for you?’
Brain in Gear
When we have children with
any complicated need and
health issue where do we
begin? Where does are
exhausted brains even start?
After a while everything we
experience becomes a blur
a never ending episode of
surviving daily to get through.
There will always be something
that my brain will fail me on,
as thoughts usually run through
like a freight train. ‘Is she able to
walk home? What should or can
she eat? Are there signs etc?’
It is just endless for us parents.
As I try to explain and make
sense of my muddled thoughts,
to sound like I’m half human
and not the Zombie I feel inside.
Please don’t make me feel time
consuming like I’m on a countdown.
I’m under that pressure all my
life now I’m a mum of a child
with complex needs. Give me
the luxury of a break.
At least acknowledge my child
who has strength inside that I only
thought superheroes possess.
Who constantly surprises me
with her wicked sense of humour,
through battling so many issues
that would bring a grown man
to his knees.
Not my girl she takes it all in her
stride while trying to make me
smile. I know my child deserves respect
and honour reserved for soldiers,
because her body has become
her battleground .
Remember for some of your
patients you may be the only
human contact they had in
days, weeks even months.
At least allow them a chance
to feel the warmth of humanity.
That you understand their
struggle, how much pain they
endure. In that moment make
them feel they matter so many
people probably don’t anymore.
When symptoms are puzzling
and answers are not easy, dare
to think outside the box .
You may not see anything fitting
your text book education but
that doesn’t mean it not real
and devastating lives listen and
A Mother Knows Best
I have no medical education
admittedly but one thing I
have is mothers intuition
which haven’t failed me yet.
So give me the credit I deserve.
Parents become more
knowledgeable then any
medical dictionary you could
We take on every professional
role possible to make sure our
children’s needs are met. The
difference being for you, a patient
is just part of your career but
for us, our child is our world.
Never think it is better, because
you don’t know how to put into
words the truth. Believe me when
I say reality catches up and will
hurt like hell. Preparation is all us parents
know. We need to know our
enemies before we go to
fight. You’re not saving us from pain,
you’re just delaying us.
Some may say this is quite
a brutal generalisation of
Doctors, but I speak from vast
experience. A good doctor is
worth their weight in gold, but
sadly as I and I know many. To find
is like gold dust too.
All the Doctors who already
treat their patients like human
beings, I applaud you. You will never
know how much you enlighten
and appear like angels to
desperate weary parents, just
searching for answers out of
their unfolding nightmare .
To the doctors who believe
they’re above their patients
and lack any compassion,
you chose this career no one
made you. If you can’t
even have a decent bedside
manner, there is a supermarket
down the road and a tin of
beans in need of your expertise.
Sharon founder of Campaign For Disability Awareness (CFDA), where shes raises awareness for all disabilities physical and invisible, running disability awareness workshops in the community. It is vital to this campaign that parents family and friends of children with disabilities can stand together and work toward making a safer future for our most vulnerable. A future where they won’t be judged for their quirky movements and obsessive nature, people need to be educated to understand there is so much more to these children than what they see on the outside.
As well as working in the education and media field CFDA created an Intereactive Disability Awareness stall that gives the public a chance to complete challenges while using disability aids to complete cognitive and physical activities. The stall has been very successful at getting the disability awareness message across further for invisible and physical disabilities and also illnesses. They manage to do some workshops with a variety of people ranging from Plymouth Argyle Football Club, Plymouth Police, Dartmoor Zoo etc.
Sharon also runs a facebook page which raises funds for the awareness lesson. On top of all this, Sharon has set up Listen To M.E.
Look at these links, and read her blogs.