Thursday, May 30, 2013

Far Better Things Ahead

3 years...
where has the time gone?

quote: c.s.lewis

eilidh has grown into an amazing little girl:
SMA has not robbed her of her spirit,
her personality,
her essence.
SMA has robbed her of her ability to move independently

but not her independence.
SMA contributes to this gorgeous girl every day -

it makes her who she is,
spreading joy and hope
beyond everything i could have hoped for her.
and yet my heart remains bruised
and tender
(but no longer fractured)
and i have come to realise that
i don't think that that will change;
nor do i think that I want it to change
because i have grown as a person.
i am stronger
and more gallus
and a wonderful advocate for my daughter, for my family, for SMA;
SMA makes me who i am, too.
please do not think that i am a saint though,
that i truly accept this twist of fate,

the life unexpected now lived.
 i still have moments of anger ,
of disbelief,
of sadness
as deep and wide as the ocean
life goes on
and life is bright and good

for eilidh and niamh are my
guiding lights.

Monday, May 27, 2013

Three years on...

Gratitude abundant
where gratitude is due:
Three years and fifteen letters of gratitude.
Fifteen letters of thanks and gratitude
to family and friends;
thanks  aplenty for
their love and support,
their strength and gentle encouragement,
their understanding and inspiration,
their faith and grace.
Fifteen individuals who
love and accept my family just
as we are,
lifting us high,
gathered in their arms,
supporting us when
we could not support ourselves,
lending us their hearts when
ours were broken.
Fifteen people who have
brought us to where we are
into our lives,
changing our "normal"
and embarking us on the
life unexpected.

One year on and Eilidh became our guiding star.
Two years is no time at all in the lifetime of grief.
Three years and time for reflection and deep gratitude:
thank you to those who deserve my thanks.

Thursday, May 23, 2013

People help the people - you just need a little faith

Nearly three years ago I lost all hope
but put my faith in people
for people help people,
don't they?
And then more recently
I heard this song -
from the closing credits of
Broadchurch -
and thought a moment:
no one truly knows what goes on
within our hearts and our lives
but we are all waiting to be saved
by someone,
by the people,
for people help people
like me
like you.
We just need to have
and show
to our fellow

"People Help The People"

God knows what is hiding in those weak and drunken hearts
Guess he kissed the girls and made them cry
Those Hard-faced Queens of misadventure
God knows what is hiding in those weak and sunken lives
Fiery thrones of muted angels
Giving love but getting nothing back 
People help the people
And if you're homesick, give me your hand and I'll hold it
People help the people
And nothing will drag you down
Oh and if I had a brain, Oh and if I had a brain
I'd be cold as a stone and rich as the fool
That turned all those good hearts away

God knows what is hiding in this world of little consequence
Behind the tears, inside the lies
A thousand slowly dying sunsets
God knows what is hiding in those weak and drunken hearts
Guess the loneliness came knocking
No one needs to be alone, oh singin'

People help the people
And if you're homesick, give me your hand and I'll hold it
People help the people
Nothing will drag you down
Oh and if I had a brain, Oh and if I had a brain
I'd be cold as a stone and rich as the fool
That turned, all those good hearts away

People help the people
And if you're homesick, give me your hand and I'll hold it
People help the people
Nothing will drag you down
Oh and if I had a brain, Oh and if I had a brain
I'd be cold as a stone and rich as the fool
That turned all those good hearts away"

Original Lyrics by Cherry Chost

Thursday, May 16, 2013

"Before I die I want to..."

A bucket list
of sights to see
and places to visit,
things to do,
goals to achieve,
people to meet,
differences to make:
a life to make count.

one day
a simple wall was
painted black:
a girl lost someone
she loved very much,
and lost her way
and her perspective on life,
but slowly she came to realise
that she wasn't
that life mattered.

photograph by candy chang

"before I die I want to..."
has travelled the world,
far and wide
and this week,
to celebrate
Dying Matters
awareness week,
the wall came to
Glasgow and

"before I die wall I want to..."
starts conversations
because dying does matter;
death is part of nature
and the circle of life -
it is inevitable.

Today, in a death-denying
death-defying culture,
we have ventured far
from the reality of death,
difficult conversations;
that should be shared,
to prepare,
to say goodbye,
to allow closure.

"Before I die I want to... "
has made me stop and think...
I wonder
"what would I want to do
before I die?".
I wonder what is
truly important to me...

Before I die I want to... cherish my family and friends
Before I die I want to... speak the truth
Before I die I want to... grow in faith
Before I die I want to... be more grateful
Before I die I want to... live my life

Before I die I want to... walk forever along my favourite beach
Before I die I want to... eat ice cream in the parlour
Before I die I want to... float once more in the blue lagoon
Before I die I want to... return to the land of the long white cloud
Before I die I want to... show my children the beautiful world we live in

Before I die I want to... make a difference... somehow

Monday, May 13, 2013

Running free

i love these moments...

eilidh running to get to the van,
to load up for nursery,
to start her day in earnest...

 1, 2, 3, 4,
she counts
5, 6, 7, 8...

and she runs
and runs
and runs
and gets so out of breath
that she huffs and puffs,
and huffs and puffs,
as if she has just run the
most important race
of her life.

Proud of herself
she smiles a
because she won!

And I smile too,
secretly thanking Snappie
for carrying eilidh
while she runs
free and
and feeling
totally blessed
by the joy
she exudes
every waking moment

I spend with her.


Thursday, May 09, 2013

"I wish my son had cancer"

Here is an advert that appeared on page 28 of The Independent today:
What do you see?
I see a father and his son;
I see a father whose love shows no bounds,
who hopes for a cure for his son.

Are you
shocked by the advert,
by the title
I wish my son had cancer?
Or perhaps you're bewildered?
I can hear you gasp,
I can feel some of you recoil,
I sense your anger
and possibly, for some, your loss.
For the majority of you,
I sense that
a question lies upon your lips -
how can a father wish this for his son?
I'm not shocked or bewildered;
No, not at all...
I know how this father feels,
I know exactly how he feels
and what he is thinking:
I have thought precisely this -
"I wish that she had cancer".
I lost all hope;
there was absolutely no hope at all.
As a doctor I know too well how important
therapies and medications are,
relieving symptoms,
prolonging life,
giving hope to many who fear the future -
a deteriorating quality of life,
saying goodbye to their loved ones,
facing an untimely death .
Treatment and cure
are possibilities in childhood cancer;
there is therefore
Hope to cling on to,
to grasp in the middle of the night
when fear strangles your heart;
hope to guide you through
the day-to-day reality
of a life-limiting or life-threatening illness,
hope that your child will survive into adulthood...
Duchenne and SMA are similar
in that they are neuromuscular diseases,
and life-limiting,
with no treatment or cure
to stop the functional decline of
the muscles that allow our children
the freedom of movement,
nor the muscles that aid and assist
life affirming respiration;
children with Duchenne or SMA
may not live to see
With cancer
there is hope;
our children would stand a chance,
seeing their dreams become a reality.
But I can see the other side too,
the 1 in 3 with cancer
and all those affected as a result:
the 29 year old with terminal cancer,
a mother of three children
whose cancer has progressed through years of treatment,
the family grieving
the life wrenched from them
too soon.
I see the other side of the argument,
the "has this man ever lost someone to cancer?",
because I care for those with cancer -
I see their hope, their resilience,
their pain, their loss, their grief
and would not wish
on anyone,
not myself,
nor my child,
nor anyone I've yet to meet.
Harrison's dad isn't wishing the disease on his son,
he is wishing for the funding that supports cancer research,
that promotes awareness,
that fuels the research of new therapies,
that gives hope
for a cure,
for a future.
He wishes for Duchenne to receive the publicity and funding
that can change people's lives,
that can give families hope.
That is what he wishes for
and I stand beside him
wishing for the same for
So, yes,
there was a moment when
"I wish that she had cancer"
crossed my mind
but not anymore;
she is so very full of love and joy,
she teaches us how to live life to the fullest
with SMA and Whizzy Wheels;
I wouldn't change her for the world
but I would ask for hope for others.