Tuesday, August 31, 2010

Panthera Day...

what a lovely day...
heart-breaking too though as I saw Eilidh in a wheelchair...
independent in a wheelchair, mind you!

A rep from GBL Wheelchairs arrived this morning with this dinky little chair and, after quickly assembling it - and it literally was a two second job of putting the wheels on - I went with Eilidh through to the kitchen... without the rep as Eilidh certainly had a wee touch of stage fright!

I strapped her in and added the wide neoprene band which we used as additional truncal support, adding in Bella-Bear too for company. Within seconds she was moving the chair with one hand, then two and then, gaining momentum, she pointed outdoors; she was off! After much waiting, and some heart-break too, here were Eilidh's first "steps"... what an amazing moment! There is hope, so much hope where a few months ago there was none, for Eilidh's independence... And what a proud mummy I was too...

D was unable to join us today and so tonight, with the girls tucked up in bed, I showed him short video clips of this momentous day. He was moved and quite rightly - sadness that our child is wheelchair dependent but happiness because, finally she had gained a little independence and she was so happy and proud of herself...

I found out today that Eilidh may be able to get a Zippie Simba through the NHS. After a test drive of this chair tomorrow I'll try to find out how quickly we can be seen at WestMARC so that we can make a decision as to how long we can wait until we get Eilidh the chair which will, to some extent, change her life! And then the toddler or "wheeler" fun will begin... Watch out everyone, Eilidh is on the move!

Cool mornings...

This morning I stepped outside:
I could feel the awakening,
the rejuvanating
coldness of dawn.
Autumn is coming.
It's only days away.
I feel so alive in Autumn.
The freshness,
the wind,
the golden leaves.
My favourite season.
I can't wait to kick amongst the leaves...


"Come, little leaves," said the wind one day,
"Come o'er the meadows with me and play:
Put on your dresses of red and gold -
For summer is gone and the days grow cold."
Unknown

Monday, August 30, 2010

Whoopee!

Bella-Bear did it!
Eilidh is to get a Hugo Mouse...
Bella got an email from Sarah - she let me read it and I cried tears of joy...
How exciting... I'll keep you posted as to when Hugo will join our mad family... I just hope that he gets on with the menagerie of Flopsy, Baby, Susie and Bella...

I hope that Sarah doesn't mind but here's a little bit of her email...

"Hello Bella Bear and family!!!
Thank you very much for your lovely email and for telling me about all about Eilidh. I would love to make a Hugo Mouse for her. I think the words you have chosen are really nice and will help to make Eilidh's Hugo very special. I will say that I have quite a lot of children who would like to receive a Hugo, so it's difficult to say how long it will be until you receive yours...  ...But i am very much looking forward to making Eilidh a Hugo and will keep in touch and let you know once i have begun making him and again when he is finished so you know when to expect your new friend!!"

Whoopee!
How very exciting...
I can't wait to meet him...

A wee glimpse...

I saw a wee glimpse of our future yesterday.
For the first time since Eilidh's diagnosis, and with hope, I saw what life could be like...
And it wasn't half bad!
But I am aware that we were on the outside looking in...
I have no real concept of the day-to0day goings on...

I met another SMArty mummy a few weeks ago for a coffee, chat and a walk in the park.  I was instantly drawn to her - down-to-earth, open and funny - a mirror of myself perhaps?  We talked about our girls, our families, our lives and, to some extent, I felt as though I had come home.  I had found someone who knew where I was and how I was feeling: and that felt good.  Because, when you look at it, when it comes down to what I am experiencing and feeling, and it feels very selfish to say this or perhaps self-absorbed, NO-ONE can truly know what I am feeling - not even D... but the other SMArty mummy can because she has been there.  She knows how it feels to have your beautiful child, the child that you carried in your womb and nursed, diagnosed with SMA.  She will know the pain that you feel inside your heart.  She will, more than likely, ache for me...  And I could tell all of this from the hug that she gave me as we said our goodbyes on that first day we met.  (And funnily enough, on reflection, I felt that too when I shook hands with Lou from DragonMobility - the ache that she felt deep inside, the empathy that she held for me and for others too.  Note to self, next time I see Lou, give her a hug!)

Yesterday the two SMArty families met up for lunch and a play in the park and, crikey, we had a wonderful day... Great company, interesting chat and inspiring kiddies... The sun was shining on us.  The children were funny, charming and utterly gorgeous.  The parents were open, honest and funny.  I couldn't have asked for a better meeting. I couldn't have asked for more.  Our two worlds collided and we all survived intact (I think!), joined together in friendship, firstly by SMA but hopefully, in time, by more.  I do so very hope that this is the start of something honest, wonderful and awe inspiring...

Thank you for a wonderful day... you know who you are...

And here's to our wonderful future...
Within our family
and from the outside looking in, too..


Saturday, August 28, 2010

The beauty of the beach...


‎'The hours when the mind is absorbed by the exceeding beauty of the earth are the only hours when we really live, so that the longer we can stay among these things so much the more is snatched from inevitable time.'

Richard Jeffries


We headed on an adventure today... with Niamh singing "Puff the Magic Dragon", so out of tune but with such confidence and gusto, for 17 whole miles! D had to cover his ears while driving... the 17 miles seemed to last forever but her singing does make us smile!

We drove down the coast to Croy Bay just north of the cliff top castle of Culzean.  The wind was blowing and squalls shifted across the sky but we went prepared for four seasons in one day - as we always do with living in Scotland.  We thankfully did see glimpses of golden sun which felt warm on our skin, caressing us as the wind blew too.

We laughed and giggled as D and I tried to fly our kite, dive-bombing often into the sand.  But when we did get it to soar high above us, I marvelled at the rainbow colours against the back drop of stormy grey clouds - I felt alive.  So very happy to be alive.  Niamh ran into the sea and played and splashed and frolicked; she is such a wee water baby and loves to get as wet as wet can be.  Eilidh watched on from the comfort of her backpack, high on D's back as the sea "lapped" at  their feet, drinking everything in.



there were 3 on the beach...


There were brief moments of solitude for me.  I love being on the beach and always have, but now I tend to have to share it with the little ones and have to saviour the brief moments of quiet.  I stood with my face turned to the sky, marvelling at the clouds and the beauty of the world:  I often find that I am closer to God in these moments.  There I was, the sun coming out from behind a cloud, warming my soul and I could hear my thoughts clearly: "God is here.  God is everywhere. He loves you and your family. He shines the sun upon you all".  I was thankful: minutes before I was hurting inside as I realised that beaches will become relatively inaccessible to Eilidh in her wheelchair...  How quickly the mind can wander...

Friday, August 27, 2010

Love...

I gazed down at my wedding ring this morning
and remembered our wedding day.
It's not our anniversary or a special day
but does it need to be special to remember
my beloved,
my friend?
The one whom my soul loves
wholeheartedly.
Each day I marvel at our love.
Each day we give to each other and to others
and when there is nothing left to give
there is still our love
and the beating of our hearts.


“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.”
Lao Tzu

Wednesday, August 25, 2010

The Whizzy Wheel Fund...

I have decided to set up a separate page for The Whizzy Wheel Fund so that anyone can access it and have a nosey and a read and, if they want to, donate some money to this wonderful cause.

All monies donated will go directly to a fund set up for Eilidh and accounts will be kept of all transactions for the account so that it is completely transparent for those donating.

I also intend to use the blog to let people know of events and ongoing sponsorship and to post photos of Eilidh and the equipment that we purchase for her.

The first piece of equipment that we intend to purchase is Eilidh's SnapDragon. This will enable her to become mobile and independent, allowing her to explore her environment, run over toes and drive like a crazy toddler! The cost of the Snappie is £19,908... The blog will also allow everyone to keep track of monies raised... another part of being transparent...

So here goes, the link to The Whizzy Wheel Fund...


Auto-pilot...

Is that what I'm doing?
Living each day as if on auto-pilot?
Doing what has to be done?
Coping with Eilidh's diagnosis automatically?
Without much thought?
Without direction?
Without actually being in control?

Why am I thinking this?
Someone asked today if I was "on auto-pilot?"
Well, am I?

No.
I engage with each day.
I try to choose my attitude...
My mood...
My actions.
I try so very hard...
I need to.
For my sake
and for the sake of my family.

And each day
I try
and need
to find a little ounce of strength
From somewhere
or someone.
Enough to carry me through the day.

And each day I try to be calm
And thoughtful
Because I need to.
Because I have to.

I take each day as it comes.
Fully present.
Fully aware.
Fully engaged...

Rock-a-bye baby

Eilidh struggled to fall asleep last night
so I lifted her from her cot
and brought her downstairs
to cuddle on the sofa.
She looked at me with her wide hazel-green eyes,
shrugged her shoulders,
wrinkled her nose -
just like her sister often does -
and smiled her cute smile.
I cuddled her 
and Bella-Bear in closer;
inside I could feel my heart-breaking.
My body aching for her.
I would do anything for her
to take this SMA away.
I will do anything for her
to make her life as beautiful as it can be...

It's been so long since I cuddled in close with her and watched her fall asleep, her heavy lids drawing to a close on her day.

She is so, so precious and I love her infinitely.

I would like to spend some more quality time with her.  I sometimes feel that I've never really had the chance to get to know her as well as I did with Niamh at the same age.  Life is just so much busier with two and I don't seem to be able to steal away time with her.

Last night reminded me that it's important to spend time with my girls independently, building foundations of love, strength, security, hope and happiness upon which we can build our family.

So, Eilidh-Bear we're going to be having some quality time together.
Even when there is nothing left to give, I love you with all of my heart, Eilidh.
xxx

Tuesday, August 24, 2010

"friends are the sunshine of life"

A little parcel of happiness arrived yesterday from by bestest, closest friend...
"A parcel of happiness for a very brave friend indeed"
Little gifts to remind me that life is beautiful and that



"friends are the sunshine of life"
John Hay

A voucher to buy some furry boots so that my world may be warmer if not kinder...
Photos of my beautiful god-daughter, her mummy and her twin brothers.
A welcomed little parcel that made me smile and feel so, so grateful to have A in my life.
She is my life-line...
x

Monday, August 23, 2010

Bubbles...

I love bubbles..
born of water and soap;
simple,
spherical,
floating,
iridescent,
floating,
floating,
floating...
and
POP!
The bubble has gone,
the spell broken...

I met D 7 years and 11 months ago to this day.
I believe in love at first sight...  I fell in love with him so completely.
A perfect, iridescent bubble formed around us, protecting us from the world.
I often wondered when that bubble would pop: how could things be so perfect for us?  So wonderful?

I realised today that our bubble POPPED on that day in May...
I wonder what is protecting us from the world around us now?

Sunday, August 22, 2010

"I love you right up to the moon... and back."

I love our bedtime routine with the girls...
it's ritual like in the way that it is faithfully followed
and it brings so much joy -
even at the end of a long weary day...

today has been a wonderful day however, full of friendship and good food;
even Niamh said
"I've had a lovely day..."

tonight D was reading a book that we as parents have been reading to Niamh since she was born - "Guess How Much I Love You" by Sam McBratney. 


A night time favourite

It ends...

"I love you right up to the moon... and back."

Just as D finished, Niamh asks
"How much do you love me, mummy?"
"As wide as the oceans and as high as the mountains"
"How much do you love Eilidh?"
"As vast as the deserts and as deep as the oceans"
D at this point has tears in his eyes.

And she went on,
"Mummy, I love you like the oceans and pee"
Now, I had tears in my eyes: tears of joy, laughter and pride...
You see, Niamh had remembered the Cycle of Water!
Joy!
Deep, deep joy...

I love our bedtime stories.

Saturday, August 21, 2010

From Bella-Bear to Hugo Mouse

Hugo is a mouse. He is handmade and hand-stitched with love by Sarah.
He is created for children with life-threatening or terminal illnesses or those with long-term illness or disability, to offer them love and support in times of need.
He is so, so cute... take a look at the website at Hugo's Hope

two bears at dawn


Bella-Bear thought that Eilidh might like a Hugo Mouse to be there for her on her journey with SMA so she wrote an email to Sarah this morning...

Hi Sarah
My name is Bella-Bear and I'm writing to you to refer my little girl friend Eilidh who I know would love to receive a Hugo.
Eilidh is 19 months old and was diagnosed with Spinal Muscular Atrophy 3 months ago.
She is beautiful and content and happy: she is also very strong willed and determined.
Eilidh makes all those who come into contact with her smile.
She gives me great big squishy cuddles and I love her so, so much, but I think that we, Eilidh and I, need someone to help us and give us cuddles : we thought of you and Hugo!
You see, Eilidh's mummy and daddy are looking into getting Eilidh a wheelchair and Eilidh gets a little scared when in the chair - there is plenty room for Hugo to come on too and join us on her Whizzy Wheels!
We live in Glasgow in Scotland and I have a lovely home full of fun and laughter but it's also just a little sad at the moment as everyone is coming to terms with Eilidh's diagnosis.
The words that come to mind when I think of Eilidh are: touch & tickle, love & laughter, hope & grace.
Eilidh's mummy has started blogging about our lives but it hasn't gone live yet, but you are more than welcome to check it out...
I've attached a couple of photos too - one of eilidh and me when she was little - it's my favourite picture of us together! and a more recent one of her on a swing - she loves swings, Sarah!
Well, I'm off for some honey sandwiches for lunch
Love and cuddles to you and kisses for Hugo
Bella-Bear
xx
Hugo Mouse is made with love by Sarah and each one is individual.  Sarah know what it is like to be physically limited and in a wheelchair; even though I have not met her, she inspires me.  She does not want our children to be alone at night or when they go in to hospital. She wants them always to have Hugo near, inspiring them and filling them with hope.  The words that Bella-Bear has asked to be embroidered onto Hugo are words that mean so much to me today, but I hope, in time, that they will come to remind Eilidh how much she is loved and offer her hope and inspiration when times are hard.

Not every child who is referred will be blessed with a Hugo, so fingers and toes crossed that my beautiful little Eilidh is... Bella-Bear is hoping too...

Friday, August 20, 2010

"To live content with small means..."

“To live content with small means; to seek elegance rather than luxury, and refinement rather than fashion; to be worthy, not respectable, and wealthy, not, rich; to listen to stars and birds, babes and sages, with open heart; to study hard; to think quietly, act frankly, talk gently, await occasions, hurry never; in a word, to let the spiritual, unbidden and unconscious, grow up through the common - this is my symphony."
William Henry Channing's Symphony

This was emailed to me today from friends in New Zealand - or, as I like to call it, Godzone - the county where I grew closer to God.

I hope that they don't mind me sharing their email: it touched me and brought me to tears...

Hi Sheonad,
Just got this quote from a friend, knew it would be something you would like, so have a read and inspire yourself, and I think you live like this Sheonad. God has entrusted you with a great task and I know you will be doing it bravely and with cheer (when you can!).
We are thinking of you and D,
H and G

I so wish that I was living like this, contently and elegantly, enjoying the noblest gifts that God has given me.  Living a life that is worth while, that is helping others. A life that is leading to something greater.

But I don't think that I am.  I always want more.  I want a better life for myself and my family.  Perhaps I am failing God.  Perhaps I needed this email today to remind myself of what is important in life and to try harder to live contently and wisely...

Deep thoughts for a Friday...

Thursday, August 19, 2010

The SnapDragon cometh...

With Biscuiteer biscuits we waited
And Lou arrived early!
The snapdragon cometh...

We talked briefly about my family and life with SMA. Lou shared her family story and was so very open with us which I really welcomed and I instantly fell at ease with her.  Would Eilidh though - Eilidh woke up and took some time to give Lou her first smile but she did smile - first hurdle over!

The sun was shining in Glasgow today so we decided to go out into the Garden with Eilidh. D sat with Eilidh as I walked around the Snappie.  I grinned; orange in colour with furry seats it reminded me of a Ford Cortina - all it needed was some furry dice!  It was smaller than I thought, more compact.  Not quite as finished perhaps as the Koala - not as cute and cuddly, but functional and precise.  I could already see Eilidh sitting in this and becoming independent and enjoying life. (If I am honest I think that I saw her in a Snapdragon from the moment I saw pictures of it and read about Dan, Lou, Ruth and Dragonmobility...)

Bella-Bear took Snappie for a spin as Eilidh watched with intrigue and caution.  We took the chair off and looked at the standing frame, taking this opportunity to put Eilidh in the seat on the grass with her toys.  She became less suspicious and more comfortable: in time we were able to put the chair back on the chassis and let her get used to being on it at grass level.


ready to go!

The beauty of the Snapdragon is just that - it can go from ground level to standing level with the touch of a button - green to the grass below and yellow to the sun above. Red for "peep-peep" which of course brought a smile to Eilidh's face and, in turn to ours too.  And then she was off around the garden with daddy at the controls... both slightly apprehensive to start with (and I'm not surprised knowing what D's driving is like!) but they quickly gathered confidence.  I too was keen to have a go and I did - I just hope that it felt as liberating for Eilidh as it did for me.


umm, not sure of this, mummy

So back for more tea and biscuits and down to the nitty-gritty about the business, servicing and costs.. Lou continued to endear us, not just to the Snapdragon but to her, her passion and the company's ethos.  She talked with such grace that I could not help but like her.

We said our goodbyes, hoping that we would see Lou again, but knowing that we would.  D and I need to talk more about our thoughts with regards to the chairs - we need to do what is best for Eilidh AND we need to look for funding...  I wonder what colour we will order...

P.S. the Biscuiteer biscuits shone little rays of sun on our souls on a somewhat difficult day...


divine afternoon cupcakes

Wednesday, August 18, 2010

The World is Small...

Thank goodness.
The miles between countries are vast and the oceans wide
But modern technology brings us together.
Closer.
Maybe not physically
But easily.

Thank goodness for telephones, Skype and email.
Thank goodness for Facebook.
Thank goodness for gadgets which allow us to "talk" to each other...

I had to say goodbye to Lisa today - my friend, my cousin and beautiful fairy godmummy to Niamh.  I love her like a sister; she is infinitely special to me.
She is away with her hubbie to start a new life in Canada and I am happy for them - what an opportunity!  But I will miss her so much...

And yet the World is small...
And I have to keep telling myself that today.

Love you, sweetpea
x

Tuesday, August 17, 2010

Happiness...

A card arrived today: as you know I love seeing, amongst the bills and letters of every day life, a little hand written envelope which I know will contain something of beauty...

"Happiness is like a butterfly; the more you chase it, the more it will elude you, but if you turn your attention to other things, it will come and sit softly on your shoulder..."
Thoreau

It made me smile. It's keeping me going on what is a difficult day...

A friend who thinks that we deserve to "pimp" our lives:
"we have been in contact with
DIY SOS
Relocation, Relocation
60 Minute Makeover
Pimp My Ride
- expect a busy year with tv appearances (only joking!)"

Well, actually, I wouldn't mind if I get to meet Phil... our life does kind of need an overhaul...

Saturday, August 14, 2010

Travelling abroad...

I read this piece a few weeks after Eildh was diagnosed with SMA.
I'm not sure that I like the analogy but it's about how life changes when you are told that your child is disabled, it's about coming to terms with this different life, a life that you never once imagined for yourself.
The future I once imagined is no longer tangible - if it ever was - but we do still have a future which is the most important thing that I have come to realise. 
This new future, the future still to be written, is still as beautiful and precious.
It is still full of hope...
At least I hope it is...

"I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared the unique experience to understand it, to imagine how it would feel. It's like this . . .
When you are going to have a baby, it's like planning a fabulous vacation trip to Italy. You get a bunch of guidebooks and make your wonderful plans - the Coliseum, Michaelangelo's David, the gondolas in Venice. It's all very exciting. 
After months of eager anticipation, the day arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says,
"Welcome to Holland!"
"Holland?" you say. "What do you mean, Holland? I signed up for Italy. All my life I've dreamed of going to Italy."
"But there's been a change in the flight plan. We've landed in Holland and there you must stay."

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilance and disease. It's just a different place.

So you must go out and buy new guidebooks, and you must learn a new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there a while and you catch your breath, you look around you and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts.

But everyone you know is busy coming and going to Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life you will say, "Yes, that's where I was supposed to go. That's what I had planned."

The pain of that will never, ever go away, because the loss of that dream is a very significant loss. But if you spend the rest of your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland."
This was written in 1987 by Emily Perl Kingsley, a founder of the USA Downs Syndrome Association and a write for Sesame Street.  Her son Jason was born with Down's Syndrome in 1974.

Friday, August 13, 2010

Eilidh's story...

at last...
I've been able to write about our journey to Thursday the 27th May and the diagnosis of SMA.
The beginning of our journey...

If you want to read more please head to "Eilidh's Story" on My Pages ...
And if you do read it, thank you for taking the time to do so.

Thursday, August 12, 2010

Love

As I quietly read "Sleeping Beauty"...

"I love you, mummy.
I love you.
I love daddy.
I love Eilidh.
And I love myself.
And you love me and you love daddy and you love Eilidh and you love yourself"

She's very perceptive.
Very self-aware.
And how true...

How important it is to be aware of loving ourselves.
Self-love...
Self-care...
Emotional well being...

So very, very important: thank you, Niamh for reminding me...
I love you so very much
x

Koala says "peep-peep"!

Perhaps my mental preparation and positive thoughts yesterday helped me deal with the arrival of the koala.

I have to admit it's kind of cute... small and compact with the cutest little "peep-peep"...  as I saw Jennifer from Permobil drive it into the house I was reminded of Wall-E.

Eilidh was inquisitive and curious.  Susie and Bella-bear took a wee "ride", Eilidh "peep-peeped" and played with the joystick to make the koala edge forwards and backwards.

D and I really didn't know what to ask, for the majority of the time we were really just getting used to its presence in the room, but Eilidh's interest in the chair gave me hope... there IS hope. 

Just over two months ago I had no hope.
Now I have a glimmer...

Tuesday, August 10, 2010

Edinburgh...

St Giles' Vista




“This is a city of shifting light, of changing skies, of sudden vistas. A city so beautiful it breaks the heart again and again.”
Alexander McCall Smith



Oh, I do love, love, love Edinburgh...
A family day of fun, giggles and laughter: a much needed remedy for the soul.
A taxi and train ride brought smiles to Niamh's face
Eilidh meowed with Scarface Claw and Niamh sang stories of Hairy Maclary.
I smiled a huge smile as Niamh and I went round on the merry-go-round and ate 99s in Princess Strret gardens under a tree ...
And D? He was content in his family time, in seeing his girls smile...

Happy moments to be grateful for and cherish: for tomorrow is going to be a tough day...

Monday, August 09, 2010

Cocktail hour

My grannie once told my dad never to venture out in Glasgow on a Saturday night... I'm not sure why!  Perhaps it's because the night life is colourful?  I had forgotten how much I love being part of it, in the wings, enjoying the revellers as they party, trying to put their troubles behind them.

Another night out with D on Saturday. Time for us.  The weeks seem to pass and we pass like ships in the night.  We both realise how important it is to reconnect with each other, to spend time in each other's company, concentrating purely on each other.

Saturday was a last minute decision but we deserved it.  We found out during the week that Eilidh had been awarded her DLA at the highest level - it was a moment of initial happiness, and then a little sadness as it came as confirmation of her disability. Of her ongoing need for care and support.  A realisation that we now have to depend on others and accept all help offered.

So Saturday... a divine hotel, orgasmic cocktails, delectable sushi, and sleep, deep sleep.  Time to relax and read and sleep.  Time to be with D - the bestest husband and friend in the world.  I'm so glad that we are on this journey together.

Saturday, August 07, 2010

Day breaks

and I wander into Eilidh's room
To see her smile.
I pick her up
and she cuddles in.
She looks upwards to her bird mobile and blows:
Not enough to make it move
so I help.
And I start singing...
(Or at least I try to sing!)


"Birds flying high you know how I feel
Sun in the sky you know how I feel
Breeze driftin' on by you know how I feel


It's a new dawn
It's a new day
It's a new life
For me
And I'm feeling good

Fish in the sea you know how I feel
River running free you know how I feel
Blossom in the trees you know how I feel


It's a new dawn
It's a new day
It's a new life
For me
And I'm feeling good


Dragonflies out in the sun you know what I mean, don't you know
Butterflies all havin' fun you know what I mean
Sleep in peace when the day is done
And this old world is a new world
And a bold world
For me


Stars when you shine you know how I feel
Scent of the pine you know how I feel
Oh freedom is mine
And I know how I feel


It's a new dawn
It's a new day
It's a new life
For me
And I'm feeling good"

My favourite song...
I think of it every time I see the mobile above her cot.
A new day, Eilidh-Bear:
And we are feeling good...

Friday, August 06, 2010

Elephants

Since Eilidh's diagnosis I have been very aware of the elephant in the room.  In fact, at times, there has been a herd of stampeding elephants and they have overwhelmed me.  I guess that some people don't know what to say, or if they do know what to say, they can't quite bring themselves to say it.  I wish that they would just talk about it, openly and honestly. "It" - Eilidh's disability or condition - is now part of our lives: we have to live with it every single day, we cannot escape SMA and we need to be able to talk about it...

So, my solution, to stop the sense of being overwhelmed, to bring a little smile to my face is an elephant.  Or a herd.  A print of elephants by Louise Cunningham from Paper Alligator at www.notonthehighstreet.com:


Love Elephants

They arrived today and you have to LOVE them... they are sitting on the mantlepiece and they are making me smile.  So now I can see the elephants in the room... they are real and ever-present...

Thursday, August 05, 2010

He's a good egg...

... my brother.
He brings sunshine into my life.
Quite literally.
Sunflowers for the Mac girls arrived this week.
Yellow, glorious, sun emitting flowers...
They make us all smile as the light summer rain falls upon us.


a little ray of sunshine

We haven't always been the best of friends.
We fought like cat and dog all through school.
It was only when I left for uni that things got better.
It was only when I left for Aotearoa and returned home that I realised he had grown in to a man.

Yes, he's loud and arrogant, confident and proud;
But underneath he is sensitive and kind and loving.
He is always there for me and I know that he always will be.
I do not doubt the love he has for me.

He is my brilliant, wonderful brother.
I am so, so grateful that he is my brother - all mine!
And I love him so much

x

p.s. thank you for sending us our glorious of sunshine... and there is always sunshine tomorrow too...


there is always tomorrow...

 This beautiful and vibrant print is by Bianca Hall at "Kiss her" (http://www.notonthehighstreet.com/) - it makes me smile everytime I look at it.  I now covet her "Silence is Golden" screenprint which is handfinished with diamond dust... every moment of silence in this home is welcomed and treasured, but these moments are few and far between - the joy of a family home full of love!

Wednesday, August 04, 2010

In therapy... part one

It sounds very American, but I'll admit it, I'm in therapy...
Today was my eighth session and apparently I'm quite normal!



I have struggled with post-natal depression since Eilidh was born and my mood slipped further as I began to suspect that Eilidh's development wasn't normal.  I hoped that I was being paranoid, that the power in her legs was improving but I'm a General Practitioner and I couldn't escape the fact that, deep down, I thought that there was something wrong

As my mood slipped and I became more anxious I made the decision to go to CBT privately.  I couldn't wait for the NHS: I needed to take control and do something positive for myself. Now when it was important for me to get better. Thankfully I started before we got Eilidh's diagnosis...

I remember the morning before we got the news about Eilidh.  I was at CBT feeling scared and empty, angry and lonely.  I thought that I would be unable to do anything to help her and this really worried and scared me.  Why did this have to happen to us?  Why was life so unfair?  I had all of these negative thoughts of Eilidh being disabled and dependent, alone and unloved, bullied and ridiculed.  I was spiralling downwards and didn't know how to stop myself.

I was encouraged to think about positive possibilities and ways that that I could help her.  I wondered whether it was fair that someone else's little child was blessed with SMA?  And why not us?  I realised that, at that point, the possibility of her being able, walking and independent was still a reality.  I came to understand that I would still love her and nurture her, and provide her with a safe and loving family environment.  That I could play with her, teach her and have fun and giggles.  The biggest realisation was that by loving myself, by taking care of myself, I could take care of her and that anything would be possible.  I saw her with only positive attributes - independent, determined, willful, intelligent, happy, healthy and loved...

And that is how I survived the initial shock at the diagnosis... positive thoughts that I hadn't been capable of before that CBT session...

American it might be, but being "in therapy" is helping.


Sanity...

is it over-rated?
i'm trying very hard to stay sane today...
i think, all things considered, i really am quite sane:
for me!

sometimes i just need to distract myself:
a good book;
a trashy tv drama;
baking a cake;
shopping;
or knitting.

more often than not though it's the written word that distracts me, allowing me to wander into a fictional, reflective and peaceful world where I can choose to be sane or not... just for a moment, before returning to reality and choosing serenity.



Voices

Voices in my head,
Chanting, "Kisses. Bread.
Prove yourself. Fight. Shove.
Learn. Earn. Look for love."

Drown a lesser voice,
Silent now of choice:
"Breathe in peace, and be
Still, for once, like me."

Vikram Seth

Tuesday, August 03, 2010

dawn slumber...

those moments at dawn,
as I slowly wake from slumber,
are the best of the day.
in those moments
I am at peace
and everything is right in the world.
everthing is simple.
my soul is light.
there is no SMA.
and then it hits me.
hard.
and reality kicks in.
the day starts
and the sadness seeps into my soul.
but i smile
and carry on
because i have a wonderful life:
a loving husband
and two beautiful girls.
life is good.
the day continues on...

Monday, August 02, 2010

snapdragons and koalas

we took a big step last week:
large and daunting...
we started to organise demonstrations of powered chairs.

flower v marsupial... and, although I shouldn't say this, we already have a preference...

Snappy the Snapdragon is a powered chair by Dragonmobility:


Dragonmobility is a small, family run company set up by Dan and Lou based in Cambridge.  Dan and Lou's daughter Ruth was diagnosed with SMA in 1981.  Realising that Ruth would need to be independently mobile to live as normal a life as possible, the yellow peril was born - a powered chair which could amazingly move from floor to heighchair height.  Ruth was independent at the age of 22 months....

WOW!

pretty gobsmacking really, but totally inspirational and liberating too...

so lou is coming to visit on the 19th of august to tell us more and demonstrate all that the Snapdragon has to offer ... we are so very excited...

we already love the idea of a snappy and can imagine eilidh whizzing around in her own chair, but it's a daunting thought too - she's 18 months at the moment and we probably won't get a chair until she's nearer to 2 - we have to apply for funding, fundraise and then order and wait...

but that's not what is daunting...
yes, the magnitude of finding funding is huge...
yes, the waiting will be difficult as we yearn to see Eilidh independently mobile for the first time...

what is daunting is this - seriously, can you imagine a 2 year old in charge of a 113kg powered chair which can speed along at speedy speeds - it's incomprehensible...

but the thought does make me smile too...

my crazy little girl, independently mobile, with niamh standing on the chasis, tagging along for a free ride... whizzing round and round and round in circles...
and the obligatory "pimping" of the chair.. fairy wings perhaps?

in-com-pre-hen-sible!!

then there is the realisation that our Eilidh is going to be wheelchair dependent and the sadness seeps into my soul.  I pray that seeing Eilidh in the chair, seeing the excitement as she gains her independence, will more than compensate for this sadness I feel right now...  I have to hold on to that mad and  mental image of my girls on the snappy, enjoying life to the full; me standing watching, with D at my side, smiling a huge happy smile as we are a happily mobile family...

(oh, yes! the koala does still have a look in - Permobil come to visit on the 11th...)