Tuesday, November 18, 2014

Lives Worth Living



Her children were not suffering.
They were alive -
joyously alive;
disabled
but
alive
and living
each day with
SMA.

It is possible to live a 
joyous,
fun,
adventurous 
life
even with a 
disability.
My daughter has taught me so.

Those living with
disability
are human beings - 
eating,
smiling,
laughing,
loving and
enjoying life to
the fullest.

Those living with
disability
are
able,
beautiful
and intelligent
beings;
Their lives
no less
valid
than the next.

They are
living
their lives,
not
suffering.

I believe that we,
society as a whole, 
are 
responsible
for the death of those
children.
We, the general public,
as parents,
medical professionals,
allied health care professionals,
representatives of the media,
members of the government
are to blame.

We see and believe
that those less
fortunate than us -
those living with 
disability,
chronic illness,
physical and mental illness -
are not valid as 
human beings
in all that they do,
in all that they bring
to this world.

We see them as
invalid
and
suffering,
unable to contribute
to society, 
but, in fact, they do.
They so very

do!

She needed to believe that her children -
the children she had dreamt of, 
carried in her womb 
and borne to this earth -
imperfect as they were genetically -
were perfect.

She needed to believe that they were not suffering;
that life would become easier;
that her children would bring
joy to many;
that they would contribute to society in ways
unimaginable at the time of diagnosis;
that they would live independent lives - 
go to school, study at university, find a job;-
that they would find love and, one day perhaps, bear children.

She needed to believe that her
beautiful children had 
lives worth living and 
we failed her.
Society failed her.

She believed her children were
suffering -
and this is the true tragedy -
and that she was,
ultimately,
protecting them.

She believed that there was 
no
other option,
no way forward,
no happiness to be sought.

We failed her.

We could have shown her the truth - 
living with disability isn't the end.

We need to change the way we see those 
living with disabilities - they are our equals.

We need to treat them with respect -
the same respect we wish for ourselves.

We need to show compassion
because, in the future - today, tomorrow or thereafter -  we could be the one
living an unfamiliar life with disability.

If only she has known a better life was possible...




Monday, November 03, 2014

The Beauty of Brokenness



I need to believe this today.
I need to be reassured that here, in the midst of the daily struggle, 
something truly beautiful exists.
Broken perhaps,
but utterly beautiful always.











Wednesday, October 29, 2014

And still I rise...



I found a draft post tucked away on Blogger...

Things haven't been great over recent weeks, the fear of today and tomorrow overwhelming and consuming me. 

And today this post, reminding me that I have succeeded in picking myself up before and that this process gets easier with time.

Some friends stand by me still, keeping me afloat and new friends have joined them: even in their silence I know they are with me and that, for me, is the true meaning of friendship.




"... I know you are going to feel better... I remember very clearly the first time we met... (the) next time...I saw a very different person - soft and warm and silly and clever and sophisticated and deeply in love.  I said to (the duke of bedford) "she's cool - I'm going to try to be friends with her."  The third occasion which sticks in my mind is you and the newborn N.  You were peace and contentment and love personified - you made it look effortless and joyful - I began to realise your immense ability to care for others.  You and the two kids in the double Maclaren was even more impressive - laid back, laughing, delighted, full of amazing creative ideas.  The I remember the sheer shitting myself terror and tears of E's diagnosis - bloody hell you approached it with such honesty, took it like a full punch square in the face and I watched you pick yourself up after each hit, getting bloody and bruised but unbowed... You are a voice of reason and I value you and your friendship immensely.  There is more to you than meets the eye and what meets the eye is damn impressive..."




And still I rise...
Thank you, Duchess of Bedford, you are a true friend.
xx