Thursday, April 28, 2011

THE Wedding of the Year

Niamh came home last night and told me that she was getting married.

Yes, you read right: married...

After a courtship of only 2 months she was to marry F - her boyfriend at nursery and the little boy next door.  A fairy tale romance perhaps?

F had asked her and within a matter of hours THE wedding of the year had been planned... Kate & William, you never truly had a look in!

Minutes after getting home she had decided on the dress, a tiara and a veil - the veil an heirloom from her little grannie's table!  Niamh was so delighted with her dress and so excited about her pending nuptials.

The wedding took place this morning: I had always thought that I would be there to see my beautiful eldest daughter married but we, sadly, weren't invited.  As D and I were busy joking that this was a "shot gun wedding" and perhaps she was "with child", Niamh became Mrs J and they celebrated with friends in the nursery garden, eating pizza, crisps and cupcakes, and dancing in the glorious sunlight...  A guest said "it was a beautiful ceremony".  Other guests when asked "who is getting married tomorrow?" answered "niamh and fraser", for these nursery children today was THE wedding of the year - sorry Kate and William, you may be Royals but you don't stand a look in at the Glen!


Here are a couple of the beautiful bride
xxx








Wednesday, April 27, 2011

The Gallery - My Koru

Quick!
Home from work and I'm off for a wander, keen to revisit Tara's Gallery where the theme this week is "Green" - see you there...






my jade koru






a fern frond unfolds
the perpetual movement
of new life afresh





This photo is of my jade koru necklace from New Zealand.  New Zealand is my spiritual home - the place I have, in the past, often run to when my life has been upside down.

A koru is a spiral shape based on the shape of a new unfurling silver fern frond and symbolizing new life, growth, strength and peace.  The circular shape of the koru helps to convey the idea of perpetual movement while the inner coil suggests a return to the point of origin. 

My koru takes me back in an instant to the Land of the Long White Cloud,  Aotearoa, and its verdant landscape.  It reminds me very much of spring and of new and abundant life. 

More importantly though my necklace reminds me that we are all continually growing and moving forward and yet always returning to the true essence of who we are for we are central to this journey we are on.

It's spring time, the sun is shining and new life is beginning - how very, very exciting!



Take a look at the other Gallery exhibits here

Monday, April 25, 2011

Blossom








 
bubblegum pink hues
blossom against the sky
scents of spring bloom forth




A moment yesterday -
Eilidh and I were sitting under the blossom trees
when heaven came to earth:
the clouds parted,
the sun broke through, 
small blossom petals fell gently around us
and I felt at peace -
Truly at peace.
A beautiful moment.






Thursday, April 21, 2011

Magic Shoes



Dorothy's little red shoes were magical, weren't they?
"there's no place like home"
click
"there's no place like home"
click
"there's no place like home"
click

Eilidh loves shoes and squeals with delight when it's time to put hers on.
She loves shoe shops, taking in all the colours and styles, revelling in pure delight.

SMArty mummy once said,
"I wonder if she thinks that shoes are magical and that they'll make her walk..."
I hate to say it, but I think that she's right.
Yesterday Eilidh said,
"walk. outside. mummy. peese?"
And my heart broke a little; she's only 2 -
I thought I had longer until the questions began.
I thought that I had longer to dig deep
To find the answers
To explain
To Eilidh
About SMA.








"Somewhere Over The Rainbow, Bluebirds fly. Birds fly Over The Rainbow. Why then, oh why can't I? If happy little bluebirds fly beyond the rainbow, why oh why cant I?"
Dorothy, Wizard of Oz




Wednesday, April 20, 2011

The Work Me




I watched this video some time ago at a point where I had resigned from my practice and I was struggling to get a sense of "me" with regards to work.


We all have many titles, many jobs, many personalities which contribute to our whole being but do any give us a true sense of " work me"? 

I wasn't really sure who "work me" was any more...

I pondered and pondered, over and over, what it meant to be " work me"
And then I saw this video:
It wasn't the lyrics
But the titles the actors hung from their necks
That caught my attention.
Each one defined simply by a single word, a single role, a single job.
And it came to me;
My job,
My role...

And then I forgot and carried on pondering and wondering until I decided that general practice was right for me and right for my family at this moment in time:  I made peace with this decision... or so I thought.


Last week I stumbled across the advert for my perfect job -
A job I feel like me in, a job which makes me feel whole -
And I was sent into a bit of a head spin about what to do.
But then I remembered this video and I was reminded that no door is closed.
Doors of opportunity remain open before me:

"It's better
To make your mistakes than to live without knowing
It's better
To fall on your face than to stay on your feet
as long, long, long
as you tried your best"

So maybe I should apply
But I'm nervous;
What if it is the wrong decision for me and for my family?
But then, if I don't apply I will "live without knowing" if it's right or wrong...

And the job or role that hangs comfortable around my neck?

palliative medicine

It's time to move forward...

The Gallery - My Blog

I thought that I would pop by The Gallery again today...
It was a lovely place to visit last week -
Some "me" time amongst like minded people,
Some time to sit a while and ponder and reflect,
A place to be inspired.

This week's entrance fee is "My Blog" - a photograph which in sum way sums up my blog...


tickle me... again, again!


Why "Touch and Tickle"?

I don't really remember much from the early days, when the pain was so raw and so very overwhelming.  We hid away from the world and from our friends until we were ready to see them.  The family and friends who we did see offered us comfort but now, looking back, I remember very little of that time and even less of the comfort that was shown to us.  A close friend, The Duchess of Bedford, who has been truly wonderful through this difficult year, told me something which stuck - children with SMA like being touched and tickled.  She made me smile and there, in those words was a little flicker of hope.  Eilidh loves being touched and her giggling with joy at being tickled is one of my favourite things to behold .



Why blogging?

I needed to make sense of what I was feeling and thinking.  I was in turmoil and I had always previously turned to my diary in times of trouble.  Apart from trying to make sense of it I wanted to keep a record so that I could one day look back and see the progress that I had made, that my family had made.  I wanted to share this journey with other parents who will find themselves living with SMA too; I wanted to let them know that others have been there before them, in the darkest place imaginable and made it out in one piece!  I never want another parent to feel that they have to go through living with SMA alone, from diagnosis to beyond.



And?

I lost all hope when we received the diagnosis and I didn't know what to do so I put my faith in people...  And I wasn't misguided; I have been lifted high by people.  My hope has been restored and I now hope to "pay-it-forward".  This is what blogging has done for me; I have been able to reach out to people in a way that I never imagined was possible.



So why Tickle Elmo?

If you have made it this far, it's pretty self-explanatory really, Elmo giggles and laughs and writhes around when he is touched and tickled.  Eilidh LOVES being touched and tickled, and her huge smile and infectious giggle lights up my world.

So there you go: Touch & Tickle summed up in a photo...



Go on, tickle someone today - you know you want to!
Enjoy the giggle...

Check out the other Gallery attractions here




Monday, April 18, 2011

Blog Hoppity Hop

April's Blog Hop...






I've been blogging for a while and when I recently decided to go "public" it wasn't an easy decision.  My story, my family's story, is raw and very personal, but I started blogging to find hope and am finding that writing and sharing our storing does give me hope.

I decided when I went "public" that I would join the next Blog Hop; so here I am!

So...

Take a look around, leave comments if you please and I'll just go & get a hop on...

Prayers and Blessings

"blessings" by dorothy stirling

“Prayers go up and blessings come down”

Yiddish Proverb




I was lying in bed last night
Thinking.
Remembering
The nights when I lay
Hoping
For my unborn
Child.
Praying for
Health.
Asking for
Genetic,
Physical
and
Mental
Health.
Every night,
From the
Moment of
Possibility,
I asked and prayed:
My prayers
May not have been
Answered
But instead
We are
Blessed.
Everyday
We are blessed.



Saturday, April 16, 2011

The moment

See what happens in a moment:
Stop & Feel it,
Drink it in
And be present.

Enjoy the weekend...




Embrace Haiku

seeing what happens
when embracing the moment
her heart opens wide






Friday, April 15, 2011

Day 2

Day 2 of BTW.
Back to where it all started -
My training practice.
Everything is familiar.
I feel safe and secure.
It's been over 6 years since I started my journey as a GP...
1 wedding,
2 children
and lots of ups & downs ago...

Am I the same person?
Mostly;
I am mostly the same.
Perhaps a little more empathic.
Perhaps a little hardened, too though.
More life experiences have been survived,
More knowledge acquired.
More confidence in some areas,
Much less in others.



lightupthesky



Behind all my other roles
The doctor still exists
In some shape or form:
I wasn't at all sure that she did
Or even if I wanted her to,
But she is there.

I am merely testing the water,
Dipping my toes in.
I'm not sure if I can do this anymore:
Life seems too difficult
And I don't know if I have anything to give.
But I need to try.
So, back to work?
We'll see...

Thursday, April 14, 2011

home.good.drained









0940.
ok...
so here I am.
1st consultation over:
1st consultation since march last year.
it wasn't too bad.
just some reassurance needed.
the big scary word -
cancer -
popped up in conversation
but, actually,
it was just a
distraction.
the patient wanted reassurance;
they wanted someone to say
"it's going to be ok"...
and that i can do!

1300
text to d
"home.good.drained"
a day survived
back to work.

Wednesday, April 13, 2011

The Gallery - Tomorrow

Photography feeds my soul:

I've decided to go to The Gallery today for a visit and see if I like what I see...
I hear that it's a nice place to visit,
Full of photographs
from aspiring photographers
and mummy bloggers alike.
I need an entry ticket though:
The theme is Tomorrow...

I was inspired this morning:

Tomorrow is uncertain
& not a given rite.
It is yet to be penned,
Our futures unknown.
But one thing is
Certain -
Live in the Present
For Tomorrow is a Gift









Hugo

I thought that it was about time that I posted some photos of the one, the only...
HUGO MOUSE!

I have to thank Sarah Kidd for the love, care and attention that she puts into each individual and unique Hugo...

I think that each stitch goes someway to show that she puts her heart and soul into Hugo with the hope that he will make a little one's day a little brighter...




Hugo Mouse


Hugo & Friends


And some of the little details I adore...



A heart full of hope x



Each little stitch of love



And to the shining stars, Eilidh and Hugo, with
Love & Laughter,
Hope & Grace,
and
Touch & Tickle.



Best buddies


Thank you, Sarah for being so very inspirational
xxx

Tuesday, April 12, 2011

Whizzy Wheels Nominated!

It's funny...

I checked out the MAD award Blog list for the Most Inspirational Blog Award and saw in black & white :

Touch and Tickle

I wasn't really surprised because I knew that my beautiful little flower girl had nominated me.
(thank you, x)

What surprised me was that Whizzy Wheels was there, too...

It's funny: I have never thought of what I have done with Whizzy Wheels as being inspirational - I just wanted to do everything I could to enable and empower Eilidh to live as independently a life as possible, SMA or no SMA.

Would another parent not do the same?
In my heart of hearts I hope that they would
And that is perhaps why I don't necessarily think that Whizzy Wheels is inspirational...
But to whoever nominated me - thank you!




A wee reminder

Every so often a wee reminder pops through the door:
A little hand written envelope
Which makes me smile even before I open it.
I can usually recognise the writing
Which hints at what may be inside.

Sparkly hearts
Fall
gently
to
the
floor...


Quotable Cards



A wee reminder to let you know that someone, somewhere is thinking about you.
A wee reminder to reaffirm that you're doing ok.
A positive affirmation to keep close and look upon when times aren't quite so rosy



"... you don't know what the future holds for you.  You're a strong and creative and resourceful woman and I know that you'll find your way to carve happiness out of the days and invent adventurous ways around all the obstacles that you are seeing before you.  Keep putting one foot in front of the other and you'll get through this.... I have faith in you and your family."

Thank you for my wee reminder, for the sparkly hearts and for being a wonderful friend.



Do you have someone that you could reach out to today?
Go on... Hug a Heart ...
Make a difference to someone.







Monday, April 11, 2011

the MADS!

I've been nominated in the MADS 2011 which celebrates the best of UK Mum and Dad blogs! 

Whooopeeeee!

What's more I've been nominated for the Most Inspiring Mad Blogger Award sponsored by Mothercare... how awesome is that! Especially considering I'm just being me and trying to spread the word about SMA and, hopefully, helping other families who find themselves in a similar situation!
So if you would like to nominate me again - the blogs with the most nominations go through to the next round - please hit the button on the right and fill in the form...






me time from afar





Just as my Fairy Godmummy Fun Fund magics a moment -
The last of some "me time" sent from afar -
An envelope arrives
To promise some more...

I have been so, so very grateful for these moments.
They make a difference to my day to day;
A moment for myself
To be me
and celebrate
Who I am.


thank you, thank you, thank you
xxx

Sunday, April 10, 2011

Adam's Poems

I wrote about Adam in July and today I saw a link to his blog and his Fundraising Trike Ride for Contact-A-Family...

I stopped by his blog to say thank you for inspiring me and making me smile we back in July when everything seemed so dark and difficult.

He has inspired me again today; my thoughts that children lead the way and teach us what life is all about ring true throughout his poem.



Coming Out Of The Ghetto

We are coming out of the ghetto,
We are shouting loud and clear,
About the rights that we have,
This is going to be our year.

We are coming out of ghetto,
We are going to join you all,
Full participation,
Is our clarion call.

Don't dare to underestimate
All that we can do,
We have our thoughts and with help
We are able too.

We may be small, may not walk,
May talk in different ways,
But with our determination
We'll set the world ablaze.

Give us disabled children
The voice we should have,
Stop deciding what is best for us,
We've really had enough.

We know our minds, if you just ask,
We'll tell you what we need,
Don't think you always know what's best,
Let us take the lead.

We are coming out of the ghetto,
We are shouting loud and clear,
About the rights that we have,
This is going to be our year.

We are coming out of the ghetto,
We are going to join you all,
Full participation,
Is our clarion call.



Adam Bojelian


Thank you, Adam!
And if anyone would like to sponsor him please follow this link to Adam's  Virgin Money Page

Friday, April 08, 2011

Snappie - this post should carry a warning!

I've been meaning to write this piece for a while, but it's a difficult one to "put to paper".  It has been sitting heavily within me and I've been sitting here at the computer now for an hour or more trying to work out what to say.  It's a story of two halves and I've been almost Jekyll & Hyde like in my writing, one full of gratitude and the other with an undercurrent of anger...

 
oh, and please don't get me wrong, I am so very grateful for all the love and support that we have received since we went live with The Whizzy Wheel Fund blog in September: without this and without every one's kindness and generosity we wouldn't have been able to get the SnapDragon so quickly and Snappie will change Eilidh's life - that I believe wholeheartedly.

When we went down to DragonMobility two weeks ago Dan was very quick to say that he SnapDragon wouldn't cure all of our problems but that we would have fun, that life certainly wouldn't be boring with a Snappie in our family!  I don't think that we have reached the fun stage quite yet, Dan, but we are looking forard to it...

We knew that this period of adjustment would be difficult, but it has caught me by surprise.  I thought that I had made peace with SMA and Eilidh's disability - oh, how wrong I was!  I went down to Cambridge with what I thought were realistic expectations: I wasn't expecting the fairy godmother to magic away Eilidh's disability, but I did think that I was prepared mentally.

 
So, honestly?
Snappie has stabbed at my already aching heart.
I feel deep, deep loss one once more;
The loss of my beautiful daughter to SMA:
Her canny, cheeky self trapped in a body which limits her beyond my belief.

 
Oh, and I am angry!
For the first time since Eilidh's diagnosis, I am angry!
Why has this happened?
We did not choose this: she certainly did not choose this...

 
The arrival of Snappie feels like the final nail in the coffin.
We have to face that our child is disabled.
That Eilidh needs a powered wheelchair to live as independent and free a life as we can ever hope for.



Snappie is part of our family but I am struggling to accept her.
She isn't as cute as the Panthera: she's big, powerful and awkward. 
Eilidh seems to be engulfed by her and yet, just as DragonMobility say, you do see her and not the chair (and this has become more the case the longer Snappie has been with us...)

I need Snappie to be hidden away: I don't want continually reminded of Eilidh's disability.  We have a room - once known as the study! - full of wheelchairs and standing frames and physiotherapy equipment that is hidden away so that I can switch off from the reality of our discombobulated life. These pieces of equipment - mere pieces of metal, fabric and electronics that do not have their own voices - shout out

"SMA!
Remember me?
I have throwing your world into turmoil...
SMA! SMA!
You can't run away from me!" 

It feels so cruel...

Our world seems to be full of "can't"s at the moment;
Obstructions,
Diversions,
Challenges,
And I don't think that I'm really ready to deal with them - house adaptations need to be done, ramps need to be put in place, cars need to be changed, playparks need to be visited, restaurants explored, accessability assessed, a life with Snappie needs to be lived...

It all seems so very difficult and hard,
But I know that I need to reach a deeper level of acceptance before these "can't"s are replaced by "can"s and I can face the world afresh with Eilidh & Snappie by my side.

Snappie,  I know that you are going to change Eilidh's life, that you will be her friend and enable her and empower her and show her the world, but right now - and I'm so sorry for admitting this - I hate you!

So there it is...
Finally it's out there and I've just realised that for the last 2 weeks that is exactly what I have wanted to shout,

"I HATE YOU, Snappie!"

 
... and already I feel a little better for vocalising it!



Thursday, April 07, 2011

Pee, mummy, pee!

Eilidh is 2.
She has Spinal Muscular Atrophy
But Hey! does she love toilet chat!


As soon as someone goes off to the toilet,

"pee, pee, pee, pee!
poo? mummy, poo?
 poo! mummy, poo!"


So off we go
To sit on the potty:




by Tony Ross


She sits there with a humongous smile,
Proud as punch.
No pee or poo though -
Just sitting and smiling.

How an earth do you potty train a little one with SMA?
Niamh was relatively easy.
I guess the Eilidh probably will be too but she's quite a canny wee thing...
I guess we'll have lots of smiles, a few challenges and lots of last minute mad dashes to the toilet with mummy carrying Eilidh at arms length; Mmmm, maybe I'll need an apron....

Wednesday, April 06, 2011

It's raining

Drawing the curtains this morning I murmured to myself,
"It's raining again... It's raining cats and dogs..."
To which a little voice replied
"Mummy, I can't see them... I can't see any cats and dogs!  Where are they?"
It might not have stopped raining yet, but I'm still smiling, Niamh.



By Adelin

Tuesday, April 05, 2011

Mad or MAD?



I know that it is early days for me and my blog.
I know that I wasn't too sure when I started blogging why I was blogging.
I think that I wanted to find a space within my discombobulated world to find some peace and a whole lot of quiet.
A place to find myself while losing myself at the same time.
Somewhere where I could just "be".

I have found that place.
I have found myself.
Through time blogging has helped me emotionally, mentally and spiritually.
And I hope, in time, to be able to help others, too.

My name is ever hopeful mummy.
I am a woman, a wife, a mummy, a daughter, a sister, a god-daughter, a god-mummy, a friend.
I am now a mummy to a child with Spinal Muscular Atrophy: - a child with special needs, a child who needs a carer, a child who is wheelchair dependent, but despite this is intelligent and strong-willed and certainly an inspiration to me.
I have also become a blogger and I have come to realise why I am blogging;  I am blogging with the hope of inspiring and helping people who are going through difficult times - whatever the difficulty is - in the hope that they too will find themselves again and begin to live with joy and hope.

So why this blog today?
The Nominations for The MAD Awards opened today.  I read about them just as I was starting to blog.
They have various different awards, but for me the most coveted is for the Most Inspiring MAD Blogger.
One day I aspire to win this: to be inspirational to others is what I hope for as many before me have inspired me and for this I am forever thankful.  So one day I aspire to win, but today maybe a nomination, and not my own!, just a single nomination, would be enough...

Monday, April 04, 2011

Cherish the Moments

Cherish every moment with your children:
Every moment that makes your heart sing;
Every moment that makes you pull your hair out;
Each smile, giggle or laugh;
Each triumph or difficulty.
For each moment is just a moment,
Fleeting and difficult to capture
Before it's gone.
Be present in those moments
And perhaps they'll live forever:
In a house full of love and joy,
Growing children
And later
Adults.

The Last Time

The father, reading to his girl
some little tale they always read
is unaware that this may be
the last one that she’ll ever need;
she’s grown past stories softly read
by daddy sitting on the bed.
The mother with her muddy son,
kicking a football in the park,
cannot sense as they wander home
through chilly, soft-approaching dark;
this was the last time they’d come out to kick that happy ball about.
How secret, sneaky-soft they come:
those last times when we’ll kiss it better, hold their hand across the road or lift them up to post a letter.
They pass unmarked, un-noticed; for
we’re not so needed any more.
So they abandon fairy tales,
and nursery rhymes that mummy sings
and leave behind soft toys - and us -
and put away their childish things;
a loss so small.
Our loss the greater, unmissed, un-mourned, until years later.

Lucy Berry

Sunday, April 03, 2011

Happy Mummy Day!

I got an early warning
"Let's go wake mummy up..."
I hear the little tip toes...
tip toe
tip toe
tip toe
"shhhhhh, we'll surprise her..."
I smile a happy smile.
"let's jump on her, daddy!"
... and they did
"happy mother's day, mummy!"
and my heart sings with joy.
The girls scramble to open my cards,
proud and happy to show me their kisses.
They open my present and gorgeous gifts fall out.
I am a Happy Mummy!
Such a Happy Mummy!
My little ones giggle & cuddle & kiss:
I couldn't ask for more...


But my tulips are gorgeous, too




Happy Mother's Day to mummys new and mummys old,
To grandmummys and godmummys:
Mummys make the world go round (with the help of their families, too!)
xxx