Monday, May 30, 2011

The Gallery - My Backyard






Niamh loves digging.
This is great news as our "backyard" is full of weeds!
(Where veggies should be sprouting!)
Tall, spindly ones, popping up EVERYWHERE.
(Over there and there, and there, and there and there...)
It reminds that just as a garden needs to be cared for, life needs to be worked at, too.
Everyday we need to work at what matters to us most.




This is so, so late for The Gallery, but check out some other backyards - go on, take a wander...

Saturday, May 28, 2011

£365




giving = hope





I pledged to donate £365 to a charity chosen by you to "celebrate" our anniversary of living with SMA, to give back when we have been given so much.


Three very different causes were suggested:


Claire from Something about Clairey shared a touching story about a precious little baby called Mia and a raffle that she was organising in memory of Mia to raise funds for SANDS.  SANDS is a charity that supports anyone who is affected by the death of a baby and also promotes research too.  Terrrifyingly 17 babies are stillborn or die after childbirth each day in the UK.



Celebrating Mums suggested Home-start which is a charity that offers support and friendship to families in the UK.  Last year alone 16,000 volunteers gave a million hours of support to families coping with such issues as post-natal illness, isolation, bereavement, disability, domestic violence.



And finally Dan from all that comes with it told me about a charity close to his heart:

"My best friend and his wife lost their three year old son Joseph in 2005. They set up a charity in his name, The Joseph Salmon Trust, that provides financial support to parents who have lost a child to help pay for funerals of allow the self employed a break from work.

Most parents aren't financially prepared for the unexpected death of a child, and funerals are exceptionally expensive. We can't help the incredible grief that they are experiencing, but we can help stop their situation getting worse by plunging into massive debts."



As you can see there are three quite different charities reaching out to very different groups and all so very, very deserving.  It has been difficult trying to chose between them - actually it's been impossible. I thought that I would use a widget to chose randomly but that felt so impersonal. 



So how did we decide in the end?

Niamh (my 4 year old) and I talked quite loosely about the charities and what they did and she took a few minutes to mull it over - or that is at least what she looked like she was doing ! - and this is what she said:


"I'd like to give it to mummys and daddys to take some time off work."
Why would you like to donate to them?
"Because sometimes they are sad and they just need time off work"


So, Dan - and I'm sorry Claire and Celebratingmums - we are donating £365 to The Joseph Salmon Trust.  We hope that we can make a small difference to someone's life.





(And little donations will also go to Baby Mia Giggle and Home-Start)






Friday, May 27, 2011

1 year







 

1 year.
365 days.
8760 hours.
525600 minutes.
42048000 heart beats.
From Spring
To Summer,
Through Autumn & Winter
And back to Spring again.
It has felt like a lifetime in our family
And we would, if we could,
Change it in a heartbeat.

1 year living with SMA.

Thank you Eilidh for being our guiding star.

xxx






Thursday, May 26, 2011

"Just the way you are"


Eilidh, Niamh and I have been dancing this morning...

Bruno was playing in the background and I realised that when I see Eilidh, my beautiful little girl, there's nothing that I would change because she is so beautiful just the way she is.

SMA and all.


I love you, Eilidh, just the way you are
xxx













"When I see your face
There's not a thing that I would change
Cause you're amazing
Just the way you are
And when you smile,
The whole world stops and stares for awhile
Cause girl you're amazing
Just the way you are


The way you are
The way you are
Girl you're amazing
Just the way you are"

The West Whizzyland Way Walk

24 hours til the

West Whizzyland Way Walk!


Walkers are packing...
tents and gear
mars bars and jelly
beer and whisky.


What will the weather do?
Rain or Shine,
Wind and Hail?
Will the volcanic ash stay away?


We will be with you every step of the way fabulous walkers...
Well, at least to send you off properly with a wee wave goodbye!
You have done a fab job of fundraising so far...
We are totally humbled!


We - well, Fish has! - have featured in some online ROCK! magazines here and here

so if you are visiting - hello!


But perhaps most importantly, there is still time to donate and make a difference to some one's life as we are fund raising for Muscular Dystrophy Campaign, Turbo Trust, Jennifer's Trust and Eilidh's Whizzy Wheels.

So, if you can, please donate here...

 



Tuesday, May 24, 2011

"I'm never afraid with you"




By Luce-in-the-sky


We love dragons, but then we are a little biased!
(for those who don't know, we have a pet dragon called Snappie...)
We take dragon rides, read dragon books at bedtime and watch a certain dragon film, peeking out from behind our cushions.

I found this poem by A.A. Milne just recently and it made me think about Niamh and Eilidh.  Niamh truly is a wonderful sister: kind and considerate, empathic and caring, encouraging and supportive.  From the moment that she met "baby" she has adored her.  Niamh would do anything for Eilidh - that much is obvious! - and, I imagine, she will always be there for her, whatever life should deal them both.

My daughters are both strong and independent, kind and caring: in Chinese daily language they could be dragons!  I hope that they will look out for each other forever and always; that they will never be afraid when they are with each other; that they will love each other wholeheartedly and unashamedly.  It's what I hope for my two little girls as they grow up together as sisters in arms, ready and waiting to take on the dragons and win.



Us Two
Wherever I am, there's always Pooh,
There's always Pooh and Me.
Whatever I do, he wants to do,
"Where are you going today?" says Pooh:
"Well, that's very odd 'cos I was too.
Let's go together," says Pooh, says he.
"Let's go together," says Pooh.

"What's twice eleven?" I said to Pooh.
("Twice what?" said Pooh to Me.)
"I think it ought to be twenty-two."
"Just what I think myself," said Pooh.
"It wasn't an easy sum to do,
But that's what it is," said Pooh, said he.
"That's what it is," said Pooh.

"Let's look for dragons," I said to Pooh.
"Yes, let's," said Pooh to Me.
We crossed the river and found a few-
"Yes, those are dragons all right," said Pooh.
"As soon as I saw their beaks I knew.
That's what they are," said Pooh, said he.
"That's what they are," said Pooh.


"Let's frighten the dragons," I said to Pooh.
"That's right," said Pooh to Me.
"I'm not afraid," I said to Pooh,
And I held his paw and I shouted "Shoo!
Silly old dragons!"- and off they flew.


"I wasn't afraid," said Pooh, said he,
"I'm never afraid with you."

So wherever I am, there's always Pooh,
There's always Pooh and Me.
"What would I do?" I said to Pooh,
"If it wasn't for you," and Pooh said: "True,
It isn't much fun for One, but Two,
Can stick together, says Pooh, says he. "That's how it is," says Pooh.


A.A. Milne





Sunday, May 22, 2011

Perfectly imperfect

I wanted to be a mummy.
To mother a child.
To give birth to a precious bundle created within me.
To watch over and protect them.
To love and nurture them.
But what did I understand of parenting?
Of raising a child to have values?
Of disciplining them?

We may well know that we will be a good mummy but can we truly know what it takes to "parent" before we are actually parents?











In the instant that becoming a mother became a possibility I think that I started to "parent": I read books, I cruised the Internet, I sought advice.  I wanted to be a good parent - no, I wanted to be a perfect parent (doesn't every mother share that dream?).  I would be a perfect parent, living a perfect life with a perfect husband and 2.4 perfect children.  But life isn't perfect, is it? 

Our perfect life squealed to a halt when our perfect little sixteen month old daughter was diagnosed with a genetic condition which means that she is intelligent and independent and beautiful and wheelchair dependent.  Eilidh is perfect in her imperfection.

Suddenly my perfect little life seemed imperfect (which some may well feel is a little harsh)and I felt so very, very lost.  I felt empty and had nothing in reserve.  No books could tell me how to cope with the diagnosis of Spinal Muscular Atrophy or the realisation that my daughter would never walk, that she was disabled.  No books would tell me how to tell her sister that they would never run or skip or hop side by side.  No books could tell me how to look at my daughter or even cuddle her when inside my heart was breaking and I was sobbing.  I forgot how to be  my perfect imperfection's parent. I was still her mother but I no longer knew how to parent Eilidh.



"A mother's love for her child is like nothing else in the world.  It knows no law, no pity, it dares all things and crushes down remorselessly all that stands in its path."

Agatha Christie




At some point, however - and I don't remember when - my instincts kicked in; instincts so powerful that I couldn't ignore them. When all seemed to be falling apart I concentrated, with my whole heart and my body, on my instincts.  I realised I did know what to do: I knew how to love her, how to hold her, what to tell her sister, what to do to save my family.  I became more confident as I realised that my instincts were worth trusting: my instincts are innate, part of my very being and they are a powerful force in creating two wonderfully independent, creative and empathic little girls.  I realised that when raising children, if you listen to your instincts, imperfect parenting doesn't exist.  You don't need to seek perfection: you don't need to be a perfect parent  to be a good mum.  You have everything it takes - you just might not know it within your heart of hearts yet - and when life seems tough, you need to look within and trust your instincts.

So I'm trusting my instincts while parenting my perfectly imperfect family.
My instincts tell me what is right and what is wrong.
My instincts tell me that I will do anything and everything for my family.
Perfectly or imperfectly, my instincts will help me be a parent and a mother to my perfect daughter and my perfectly imperfect daughter.
We will have a imperfectly perfect life...
Actually, we are already living it.












and if all else fails...

This Be The Verse

They f**k you up, your mum and dad.
They may not mean to, but they do.
They fill you with the faults they had
And add some extra, just for you.

Philip Larkin






This post is included in the @BritMums Carnival about Imperfect Parenting
at Mummy from the Heart.
Thanks, Michelle for including Touch & Tickle.

Friday, May 20, 2011

Pieces - part I

a million little pieces by James Frey


Epigraph

The Young Man came to the Old Man seeking counsel.
I broke something, Old Man.
How badly is it broken?
It’s in a million little pieces.
I’m afraid I can’t help you.
Why?
There’s nothing you can do.
Why?
It can’t be fixed.
Why?
It’s broken beyond repair. It’s in a million little pieces.





I wonder what happens when your brain fragments and dissociates from the body it controls and the world that it belongs to?



I wonder how many pieces it breaks into?



Do you ever wonder the same?



Maybe it's just me...



Your mind - I guess -  could break because of mental illness or alcohol or drugs or all three and you could well be dissociated from yourself, from your loved ones, from your friends...



Isolated and alone.








Your heart can break too - as many of us may well know...



Have you ever wondered how many pieces it would break into should yours be broken?



Again, perhaps it's just me wondering...



Does it break into 2?



Or by the power of 2?



Over and over again?



Or into a million pieces?



Or more?



Have you ever wondered if - and how - your heart repairs itself after being broken?



I hope that it does, but I guess that it'll take some time...



And some love.



But I think that there will always be a little piece missing,



Lost forever.




My heart and mind broke about a year ago - into how many pieces I do not know - when SMA came into our lives.  Thankfully and slowly, with a little love, grace and faith, they are piecing themselves back together, but I know that there remains a gaping hole in my heart which will surely never mend... 













James Frey's mind broke into "a million little pieces": at the age of 23 he had to make a choice - he chose life and fought hard to re-write his future before he was robbed of it.  Sure, he may have embellished the truth and written a few untruths, but (for goodness sake!)  he fought his demons and won!  A few years later, however, he was to face another challenge.  His son Leo was born with SMA; he lived for 11 days.



I wonder how many pieces his mind and heart broke into then?

I wonder if they are slowly repairing?

I ache for him and yet I cannot understand the pain that he is experiencing because I have not lost my child to SMA: I am one of the lucky ones - Eilidh is so very much here with us now.  Some families aren't so lucky...





SMA could affect anyone: after all 1 in 40 of us is carriers.
How do we cope when are lives are shattered and our hearts and minds are broken?
We will all go about living and coping in our own way:
We do, slowly but surely get stronger.
I promise.



Thursday, May 19, 2011

A possibility

It's only now, in the last 5 minutes, that I realise our world began to fall apart a year ago today.


A year ago today our dreams were shattered and the future re-written.


A year ago I stood sobbing in the bathroom as I prayed for a best case scenario which never came to be.

A year ago SMA became a possibility.

Wednesday, May 18, 2011

The Gallery - Mustachioed

Oh, I L.O.V.E. this week's Gallery Exhibition!
I can't wait to see some of the other exhibits here at Tara's...

You may well know that Movember (the month formerly known as November) is a moustache growing charity event held during November each year that raises funds and awareness for men's health.  If you didn't already know, well now you do!

Last Movember my cousin's boyfriend Mr Whizzy Whiskers aka John Barclay aka Mr Scotland Rugby Player extraordinaire chose to raise money for Eilidh's Whizzy Wheels (please check out the Movember posts over at The Whizzy Wheels Fund here).  He raised a totally total-tastic and hair-raising £723.08 which was just awesome!

Niamh & Eilidh, never wishing to miss out on an opportunity to dress up - or perhaps that should read "Mummy, never wishing to miss an opportunity to dress her children up"! - were keen to support John in his growing of the said Whizzy Whiskers...

So, drum roll please... here they are:
My Movember Girls!












(these are just two of the mos tried on in November...)




Tuesday, May 17, 2011

Eilidh's Moves!

Well here she is...

Beautiful and perfect in her imperfection.

She rocks the SnapDragon!


After some "peep-peep"ing

and

"up.... down"ing

and

lots of

roundandroundandroundandround

and with some tantalising and teasing with marshmallows...


Eilidh finally moves with purpose and direction...










Check her out!

We are so very proud of her...




And from The Whizzy Wheel Fund, Thank you once again to everyone who has made this possible: we are forever endebted to your kindness and generosity.




Thursday, May 12, 2011

I saw a woman today...










I saw a woman today
Sitting with her child.
She wore a beautiful mask
And a joyful smile
That radiated contentment.
But there, above her was
A cloud of sorrow
Reigning down:
Invisible tears falling gently.
If I listened carefully
And for long enough
I could hear
Her heavy heart
Crying and beating
On and on and on.
She smiled:
Present in the moment
And yet so very lost
As the world spun
And buzzed around her -
A world somewhat oblivious
To her needs and wants.
I wonder now who saw her?
Her strength and pain
So palpable and ever present.
Maybe I was the only one?
But I was seeing her from the inside,
Living and feeling every moment.
Desperate to escape
My sorrow.




Wednesday, May 11, 2011

The Gallery - Chilled Out


waterbaby!




Water.
Water, water everywhere.
Water is my friend
And it is near water or in water when I feel my most relaxed.
My most chilled...
Or my most chilly!
I am a waterbaby.

I learnt to swim in the outdoor pool at North Berwick one cold and wet summer - I was literally thrown in at the deep end.  The pool always felt warmer in the rain: perhaps that's were my love of outdoor swimming began...

One of my most memorable swims was getting in to Loch Katrine last summer with a group of Wild Swimmers.  The water took my breath away it was so cold but it was the scenery that truly stole my breath away that day.  There I was amidst nature as it was intended - raw and real and beautiful.  We swam a mile that day, against the wind on the way out and on adrenaline on the way home.  I lay on my back at times, gazing at the clouds, taking in the hills and I was so content with the world in that instant.

Water is my friend - this is how I like to chill out. 
(Maybe that's why I am planning to raise money for some of our favourite charities by organising an outdoor swimathon - but more about that later...)

So, how do you "chill out"?
Take a look at everyone else's over at The Gallery today...





Sunday, May 08, 2011

Tomorrow

Tomorrow Eilidh goes into hospital.
Obstructive Sleep Apnoea.
Lots of snoring -
HUGE tonsils.
So a tonsilectomy it is then...
Simple operation for some,
But not so simple for Eilidh.

I am anxious about handing her over to someone for them to look after her.
I have to have faith in them though: they are professionals.
The trouble is, so am I.

I do have faith
And as fairy godmummy reminded me yesterday, on the back of her Footprints email, I have to imagine that Eilidh is being carried and that He is looking after us all.

I have to have faith:
I do have faith, I DO have faith, I DO have faith.

I have to also trust the doctors though...

Soon to be 365

eilidh & bella




On Thursday the 27th May 2010 Eilidh was diagnosed with SMA.
It's a day that shook our world and brought about a change that will, for us, echo into eternity.
It's been a difficult year, one of many ups and downs;
There have been fabulous days, good days, bad days and absolutely horrendous days, but we have all grown stronger as a result and I have to admit, we're doing OK...

I would like this anniversary to be celebrated not commiserated:
We are alive and very much blessed
And we are stronger.
We are paving a new life with SMA.
It's not the life that we imagined, but it's a happy life.

As a way of thanks and celebration we will be donating £365 - £1 for every day we have lived with SMA - to a charity chosen by you.  I would like you to comment below about your favourite charity and tell me why you support it and what it means to you.  On 27th May a charity will be selected at random to receive our £365 donation (plus gift aid if appropriate). 

I am also going to ask my family - and you too, if you would like! -  to consider donating a little bit of money too: whether it be £3.65 or £36.50 or £365, it's not important - all I ask is that the donation goes to a charity of your chosing.  If you do make a donation, please let me know by commenting below and one donation will be selected at random to receive a wee gift.  Think of it as your Hug a Heart of the week.








Friday, May 06, 2011

Footprints

My fairy godmummy emailed me this poem today thinking that I might appreciate it.  I have read it many times before but today it was if I was seeing it anew.  I wonder if I walked along the sand now if there would be only His footprints?



footprints



"One night I dreamed I was walking along the beach with the Lord. Many scenes from my life flashed across the sky.
In each scene I noticed footprints in the sand. Sometimes there were two sets of footprints, other times there was one only.

This bothered me because I noticed that during the low periods of my life, when I was suffering from anguish, sorrow or defeat, I could see only one set of footprints, so I said to the Lord,

“You promised me Lord, that if I followed you, you would walk with me always. But I have noticed that during the most trying periods of my life there has only been one set of footprints in the sand. Why, when I needed you most, have you not been there for me?”

The Lord replied, “The years when you have seen only one set of footprints, my child, is when I carried you.”

Wednesday, May 04, 2011

The Gallery - April

april bunting



bright blooms blue skies
resurrect the april new
love and hope unite




It's The Gallery time of week again and I need in some way to enter a photo which represents April. A month of celebration of new and resurrected life and of lives joined together in holy matrimony.  A month of joy, spending time with my husband, my family and my friends, and more recently, a time to reflect on marriage.

The bunting in the photograph has been hanging in our garden over the weekend and it captures April for me - flowers, blue skies and much to celebrate.

What will May bring?

Head over to The Gallery for a wander... take your time and enjoy...



Tuesday, May 03, 2011

Hugo's New Home

The lovely and inspirational Sarah has been a busy lady  redesigning the website over at Hugo's Hope.

It looks absolutely amazing!

Of course, I may be biased as Eilidh features on the home page...








Please, please, please head on over and take a look and consider donating a cash donation or fabric to this wonderful non-profit cause.  Eilidh loves her Hugo; give another child the chance of hope and let them befriend a Hugo, too.

Sunday, May 01, 2011

"Every Wedding is a Royal Wedding"

I have to admit that I loved the Royal Wedding - not for the pomp and ceremony but for the hope and expectation it created and for the love it celebrated.  I thought that Friday was a wonderful day to reflect upon marriage because sometimes we take the vows that we made for granted and sometimes we don't work quite as hard as we should to keep our marriages alive.

I have re-read  The Bishop of London's Sermon  a few times now having been moved by it as I watched him read it live; such a personal sermon, looking towards William and Katherine but also directed at us - those who believe in marriage and those who may not, those who are married and those who are yet to make that commitment.

I do believe that my husband and I bring out the best in each other and that we work at our marriage each and every day:

"the more we give of self, the richer we become in soul; the more we go beyond ourselves in love, the more we become our true selves and our spiritual beauty is more revealed"








As I remember back to our wedding day and look at photographs with N, I am reminded of how much I love my husband and I strongly believe that there is no greater gift I can give my family.  This love offers us all the best family life in which to harbour love, joy and peace in.  At the same time, this love allows us to look outwards too and see what is real and important, to ourselves and to others, on this journey called life.









So thank you William and Katherine for sharing your wedding day - I loved every moment of it!  I wish you much love, laughter and happiness as you venture forward as Mr & Mrs!  (or Duke & Duchess, or Earl & Countess...)