Far Better Things Ahead

3 years...
where has the time gone?

quote: c.s.lewis

eilidh has grown into an amazing little girl:
cheeky,
headstrong,
comical,
independent.
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
but
life goes on
and life is bright and good
for eilidh and niamh are my
guiding lights.

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

today:

three

years

on

since

SMA

came

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.

 

 

 

 

 

 

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
and
like you.
We just need to have
faith
and show
kindness
to our fellow
people.









"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

"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
alone,
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
Edinburgh.

"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,
avoiding
difficult conversations;
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

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...
BLAST OFF!!

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
longest, most important race
of her life.

Proud of herself
she smiles a
HUGE
wide
smile
because she won!
SHE WON!

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



 

"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.

 

read the story behind the ad at Harrison's Fund

 

 

 

 

 

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".

 

 

In the days and weeks after E's diagnosis,

I lost all hope;

with no treatment and no cure,

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.

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,

progressive

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

adulthood.

 

 

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

cancer

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

wholeheartedly,

wishing for the same for

SMA.

 

 

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.