I miss you before my mind reaches consciousness

I miss your smile when I leave my dreams.

Missing you is the light of morning and the dusk of eventide,

it is all the hours in between too.

I talk to you as I pass your door, I hear your call in the night to me and I hear your feet touch the floor in the hallway.

Missing you is the sun glinting on snow or the foggy gloominess of tearful days.

It’s smelling your clothes as I pack them away…when I don’t want to part with them but know I should.

It is this pain I carry heavily around in my heart every day that all know about but that no one can see.

Missing you is the tears that try to overwhelm me with their hot painfulness, that jump out to catch-me when I least expect them. That make me feel foolish when they trickle unasked down my face.

Missing you is the place that is always yours at the table; it is not wanting to sit there ever again but knowing I must.

Where were you when we all sat with  garish Christmas hats that you always managed to wear and still look cute?

I was thinking of you then and all the time when laughter surrounded me, when I heard your voice out of the mouth of another, seeing your smile in my mind and on the face of a stranger!

I miss your talks with me at the end of every day, your dear sweet words of love…more than I could miss the air I breathe.

Missing you is the crisp white snow melting in a river of tears, that flow from eyes that seldom cried.

I miss too much your dark ‘chocolate coloured’ eyes, even missing the look of pain they carried in recent years. I miss the way they always searched for me. Are they searching for me now?

Missing you is the hardest thing I have ever done….or will I ever do…

Ray of  Light Photo:  Janey Johnson Photos.

Let me not falter dear Lord.

Let me not fall at this final hurdle.

Guide me now to complete this task.

Let me not plaintively wail and scream as my heart doth now.

Allow me to show dignity that he always showed.

Let me not stand beneath the stars and scream his name aloud.

Let me remember this day, as we honour him.

Grant me the courage that he always showed.

Let me not go down on my bended knees and shout at the sky,

And implore you to return him to me.

Let me not fall at this final hurdle.

Give me the strength Lord not to fail with this final task.

Susie Hemingway December 2010

All Rights reserved.

When I started this blog more than four years ago I promised always to tell how it is for a Carer of someone with MM. It was important for me that my poems conveyed a little story of the days that unfolded on this journey. Sometimes the truth of my feelings may hurt more than at other times. I try to think of other MM sufferers, I truly do. Then of course those that may be hurt by my thoughts here, will not subscribe. So I continue through these most difficult days. The following  verses describe my feelings during a very lovely birthday weekend for Hamada. Our son Jo spent a special time with his Father, we had a celebratory meal together and all in all it was a perfect weekend. Except for one thing although I suppose I have always seen Hamada through ‘rose tinted glasses’. I could now see clearly what I suppose others can see and have notice for some time, visual changes to my dear man’s face.

“Changes”

For I am not blind I see now

clearly as these given days allow,

For I am not stupid for thinking more,

willing you to stay.

This blighted weakness pursues you

like some demon spirit

whom I curse with my very being!

The once thought improbable

is happening darling man,

I cannot close my eyes

to forget these brown eyes fading,

I cannot shut my mind for all I need

is to see your smile.

These brutal changes tear at your resistance

this beloved face is changing

dissolving and vanishing from view,

but never from my heart.

I can at last, see this Beast Within.

This wicked Beast who will not leave you

However hard we try.

I am not blind – for I can see ,

this despair at Changes…

So many changes…

All Rights Reserved November 2010

A good visit at home yesterday from the Renal Team Nurse from Lincoln Hospital. She took Hamada’s blood and in future I will be able to read these results on-line and also see the remarks made by the Doctors regarding these.

We had a very nice chat, she was very skilled and a lovely compassion Nurse.  Both of us felt comfortable with her and that she appeared to understood everything we felt. We discussed many related topics regarding Hamada’s care from now on, also the subject of  his great desire to be here at “Hemingway” when the time comes. A  quietly profession nurse that imparted confidence.

Hamada Kidneys are holding at the moment and he is eating well. His Haemoglobin is 11.8 which is amazingly good for him, so he appears bright in between sleeps and was very forth coming and listened carefully to all the nurse had to say.  I feel very much better with the assurance  that help will be available should we choose to avail ourselves of this, when needed later on.

Another little treat arrived  from Eire yesterday from a dear old friend of mine.Wonderful wishes and a CD of  super soothing music, along with little beautifully worded book marks and a enchanting emerald green cross shown below. Thank you dear Karen, your thoughtfulness has show such caring and great kindness. Hamada was so delighted with his parcel. Bless you.

As swooping as the Rollercoaster

my heart hangs in fearful suspended news

that fills these ‘purple days’.

Days that bring shattered dreams,

only the strongest mind can hold.

My laughter becomes an echo that teeters on the edge,

as I snap and break at disclosures strewn around.

My heart bleeds to dissolve this anger

which knows no bounds, and is

as unruly as my mind.

Soaring high into this shimmering mosaic sky

I hang on like a child that screams into the wind,

as these punishing swoops, turn into views as

fragile and consuming as this Rollercoaster Life.

All Rights Reserved  October 2010.

All did sparkle that special night

jewelled eyes and delicious delights,

hand painted candles on ‘twinkling’ tables

we laughed in fun and conversation.

Gathered together from near and far

in atmospheric fun filled bar,

shining ladies and handsome men

music, gaiety and many friends.

Cakes that glittered with golden stars

sprinkled gently in ‘fairy dust’

ribbons that twirled in whirls and whirls

something special for all of us.

We danced a little way from you

but you caught my eye in rendezvous,

you smiled that smile as you always do,

I drunk in the delights in coloured hues

but really …all I saw was you….

All Rights Reserved

Cup Cake Photos  by Susie

As Summer fades and the air is filled with signs of Autumn.

As the leaves start their change in colour and their sprinkling fall;

the rhythm and flow of life continues its clever path.

This in-between state that suspends betwixt the seasons is all my heart desires.

To call on the Gods to allow a stay with compassion,

cleverly keeping this season of harvest and life.

Protect and preserve these mere moments of joy and utter no anguished change for me,

as grateful diamonds of joy, spill from my heart.

Take these vibrant days of colour with their smiles intact, allow for NO fear,

for you have always been my brave one but you are more so now.

Do not snap and break this plan I ask,

keeping this Autumn complete and in my whispered prayers.

All Rights Reserved @ 2010

Photo from Susie Hemingway’s Collection.

Do we pretend dear one?

As judgements are made and disclosed

In fretful haze we nuzzle closer

To mirror the fears that we know.

Do we pretend dear one?

As smiles and platitudes wither my heart

Perhaps we do, as we dream anew

Of positive days that will last.

We laugh as we follow regimes

But I’m frightened of this new terrain

Praying, dreaming and hoping

That this time there will be some gain.

Still in the consuming darkness

When sleep will just not come

I hear you fretful in slumber

Are we pretending dear one?

As in the yellowing dawn light

As my heart pushes down the pain

I think of all the others fighting a similar game,

I think of how far we’ve all come

Such bravery that cuts through this bane

To push down this ‘Wicked Beast’,

And make positive steps to gain.

No! I don’t think we’re pretending

Not in the very least

I’m proud of my warrior

Who struggles through with steely belief ,

Proud of my friends who daily defend

Giving him cause to go on

And yes of course I know we can make it,

We’ve really no need to pretend,

                                                  We’ve really no need to pretend…

Picture: Arab Warrior Leading A Charge by Adolf Schreyer

On the eve of  Hamada starting more Chemotherapy,I felt it appropriate as we finish our lovely Summer without treatment, to  post once again this short verse  first written in 2008.

My Clock.

How peaceful in this pavilion
as the pendulum is free to swing,
I wish to guard these regulated movements
as you oscillate in free time.
I wish to savour your liberty of actions
your power of self-determination.
I need to imprison and restrain this time,
to mend this clock of mine.

All Rights Reserved – June 2008

The following poem was found in my Grandson’s text book at the end of term. Nothing has been changed, it is just as it was written. It brought tears to my eyes when reading but I wanted to share it with you.

Emmanuel (Manu) is 10 years old.

My Grandpa’s really kind,

I knew he’d go to heaven,

since he got bone cancer,

when I was seven.

I think he laughs at any joke,

whether it’s good or bad,

and if he thinks it’s really good,

he laughs like he’s gone mad!

Usually he has to sleep,

since he needs his rest,

so when he is awake

he’s always at his best.

Before he ever got ill,

he used to play with me,

I used to kick a football

to him and back to me!

Alas not anymore,

we only laugh and talk,

it doesn’t stop me loving,

even if he can barely walk.

As soft as the evening breeze

that trembles through the tallest trees

as meditative as your words allow,

entwined and tangled in these Summer days.

The crystal clarity in your eyes

tells more in a dear face of courage,

than the gentleness of your silence.

Not so much now a belligerent waging war

nor a stricken fight,

just a gentle silence that goes on into the night.

Words are difficult for you to find

It does not matter  for I don’t mind,

the gentleness of your silence is far more

than feckless words that blow in the Summer wind.

The brushstrokes of our life unfold clearly

as you focus daily to capture strength,

this Summer of endless joys

nothing more is needed,

no more

than the gentleness of your silence…

All Rights Reserved 2010

I’m sure the sky appeared bluer that day

tents and stalls were assembled by dawn,

a bustle took over the village

and in their own unique way

all manner of games, raffles and prizes

appeared for this, the  Annual Village  Fete.

“Teeny tots with sparkling eyes

As all around delights they spy

Laughing faces full of joy

Gleeful girls and skipping boys

Little children with winning toys

Raffles and tombola stand

Bouncy castles and a splendid band!

Sunlight streams through covering trees

A Village Affair for you and me

Jars of jams and chutney to buy

Balls to throw and win a prize

Just to be in summer glow

And watch this Village come and go

Fifty pence will bring a chance

To win the lotto in a glance

Pretty dresses, summer hats,

Throw the balls and make a crash!

Time to sit for cup of tea

Cakes to choose, now let’s see?

Strawberries and cream on scrumptious scones

No coffee walnut will be the one!

Nothing less that I can see

A Village Affair for you and me…”

All Rights Reserved 2010

We swing together you and I

in that old shaded place we love,

peaceful sweet smelling garden air

that gentle breeze that tickles hair,

the yellow Iris in our view,

Oh how I love to be with you!

Tranquil sounds of garden spirits

the chirping of the evensong thrush

lavender blue scent comes through,

we swing together like children do.

This quiet spot where we can dream

these special hours away,

amid the slowing of day ending

we talk of yesterday,

no more is needed for you and I

we know that time is short

and so we talk and dream and think

of what this life has brought.

We dream together

                                              you and I,

                                                                     on this old garden swing.

Photo: from “Hemingway”

All Rights Reserved.

“Love seeketh not itself to please,

Nor for itself hath any care,

But for another gives its ease,

And builds a Heaven in Hell’s despair.”

WILLIAM BLAKE (1757-1827)

“Age does not protect you from love

But love to some extent protects you from age”

JEANNE MOREAU b 1929

“Life’s short and we never have enough time

for the hearts of those who travel the way with us.

O,be swift to love! Make haste to be kind.”

HENRI-FREDERICK AMIEL (1821-1881)

It was an eternal wait that day

a long perpetual tedious episode

an abuse on the senses,

the faces filling the clinic suite

sitting too close together at tables that encumbered,

all appearing the same, all resigned to their fate;

all stricken with disbelief.

I watched…

Can you put aside like dead flowers a mind that is full of fear?

Can you not feel the pain of those set faces that await

the ‘clarion call’ for  news no one wishes to hear?

Can you relentlessly show that crumbling smile?

Can you quieten the beating of your own heart?

I watched the woman sitting opposite me, a reflection of myself,

sitting beside her Man, worry etching her face,

quietly waiting the prophecy that could change their lives,

was she to receive news that would set her Man free?

Set them both free!

I watched…I watched…

I watched this fragile life snap and break,

I  watched those tears at another table…

All Rights Reserved  @ Susie Hemingway 2010

* NB After being on  Chemotherapy – Velcade  + Dexamethasone (80mg weekly) since February 22 2010 Hamada’s Para-Protein (M-Spike) has only dropped to 15  He is to have a little break and then start Revlimid.