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




Tuesday, October 28, 2014

Who is there for you?



Do you ever stop and think about the people in your life?
Your loved ones, your family and friends?
Past, present and future.

Who is there for you?
Who will grow old with you?
Who is forever immortalised?

Who is there for you?
Who has lasted  - and will last - the testimony of time?
Who became silent and distant?

Who is there for you?
Who can you run to when times are hard?
Who do you trust with your darkest secrets?

Who is there for you?
Who lifts you high in exaltation?
Who can you laugh, giggle and guffaw with?

Whoever is in your life, still there and present, reach out to them and tell them what they mean to you; explain to them what more they could be doing for you; ask what you can offer them; plan for some together time to talk and play; remember those no longer with you.

Take the time to be present with those in your life, you may need them more than you realise; just as they may need you.









"Who can I run to?
Who can I cry to?
Who can I trust with my life if I have to?
Who can I give love to if I need to?
Who, who? 

Colours are fading
All the lights gone dark
And it won’t stop raining
Everybody’s gone
And my joy is sad
Craving for love and happiness

Tell me who can I run to?
Who can I cry to?
Who can I trust with my life if I have to?
Who can I give love to if I need to?
Who, who? 

Time keeps flying away
Though it feels like my life is on hold
My love for you won’t change
I’ve pushed you away though I still need you close
And my joy is sad
Craving for love and happiness

Tell me who can I run to?
Who can I cry to?
Who can I trust with my life if I have to?
Who can I give love to if I need to?
Who, who?

Tell me who can I run to
When my world is upside down
Tell me who can I cry to
When there is no one around.

Tell me who can I run to?
Who can I cry to?
Who can I trust with my life if I have to?
Who can I give love to if I need to?
Who, who? "




Monday, October 27, 2014

Rolling



She found the roll -
Andrex puppy like -
and off she went,
free and exploring,
joyful in the every moment.
Side over side,
tangled up
and 
giggling.








This was perhaps - at least as I remember it - the penultimate day of normal infant movement for Eilidh.  Now, as I write, I wish so much that I had filmed it; that I could watch it over and over, remembering those moments when anything was possible.


We moved house, the commando crawling was there one day and gone the very next; that's how quickly SMA came into - and changed - Eilidh's life.  It's terrifying to think that this could happen to any seemingly healthy infant whose parents - unbeknown to them - both carry the SMA gene.  I can't help them at the time of diagnosis and in those days afterwards when their hearts are fractured (and I must admit that if I could, I would...) but I can tell them this: 

your child will bring you joy and happiness in abundance... 

and pray that they hold on to that hope.







I found this photo yesterday as I tidied up my desktop and couldn't help but share it with you after a family day of fabulous fun, joy and happiness abundant.