Thursday, March 31, 2011

Hug a Heart




D and I were talking.
It was a sad conversation.
A moment when our hearts were tearing and breaking open just a little.
"I wish that someone could hug my heart and stop it breaking open..."
A simple wish
But a difficult ask.

Or is it a difficult ask?
Reach out to someone and "hug a heart" today.
Whether they are in dire need or not the action is still uplifting: they will smile and know that they are loved; they will know that someone cares enough to reach out to them. I know only too well how much of a difference someone reaching out to me has made over the last 10 months: I am lucky to have wonderful friends - some people aren't quite as lucky.

How can you "hug a heart"?
a phone call, a text, a card, a cake, a kind gesture, a favour, a donation of your time, your effort or your money...
to a relative, a friend, a colleague or a complete stranger...
There are so many ways that you can make a small difference to some one's life.
Make some one's heart swell today:
Take a moment to "hug a heart"...

Perhaps it sounds too cheesy, too American, too Pay-it-Forward, but do you know what? Who cares? ... Someone else will benefit, you will make a difference, however small or large... Go on, "hug a heart"... After all, in the long run, you will feel your heart swell too...

So every first day of the month I'll host a "hug a heart" day and you can share your "hug a heart" moment... one post will be chosen at random to receive a token of thanks for making someone else's day a little brighter and a whole lot better.








Monday, March 28, 2011

The Family Manifesto

The Family Manifesto is coming to fruition...

2 new "principles":


use listening ears...
(because we can all have cloth ears from time to time - some more so than others!)

and


absolutely no ram-raiding or joy-riding!
(in light of the new addition of a 16st dragon to the family!)

A man called Anger




“Life will bring you pain all by itself. Your responsibility is to create joy.”
Milton Erickson




I'm trying so very hard at the moment to find the joy in life
And to create joy within me & around me.
But it feels so very, very hard...

I see "can't"s everywhere:
Hurdles,
Diversions
and
Obstructions...

I can see so few perceivable "can"s.
I know that I am just blind to them and that they are there;
I will see them again...
In time.

Deep within there is a gnawing pain.
But this time it's a little different:
Anger has crept in and crouches within me.
After ten months - yes, it's been ten months since diagnosis day -
Anger has finally found me:
And I'm not sure how to deal with him...
Again, perhaps,
Time will tell
&, hopefully,
Time will heal.



Tuesday, March 22, 2011

Black & White

My family and carrier testing for SMA...

Our results were emailed through to me today
And it felt so much more real seeing them in
Black
&
White...
I'm not really sure why
Especially now that we are nearly 10 months from Diagnosis Day...


A mumble jumble of words and terms:
"confirmation of diagnosis"
"multiplex ligation-dependent probe amplification kit"
"homozygously deleted for exon 7 of the SMN1 gene"
"3 copies of exon 7 of the SMN2 gene"
"consistent with clinical presentation"
"SMA carrier status"
"the risk to the couple having a child affected with SMA is 1 in 4"


Black & White
And so very real...
But the words don't change who or what we are today:
SMA is part of us and our family
And there is no escaping it...

Monday, March 21, 2011

My husband...

My husband is a truly wonderful man;
A fantastic doting super superhero of a father;
A kind, warm-hearted, patient, loving husband.
He completes me.
Always has
And always will...
I am so, so very grateful that I am on this journey through life with him...





courtesy of freya art whose work i adore...




that is... until i found out he actually likes hot dogs! ;)

Friday, March 18, 2011

In your shoes

There are nights when I wander kind of aimlessly around the web.

Tonight I'm taking a few minutes to do just that:

I got an email from The Edinburgh Bookshop announcing an Glitterary Afternoon Tea for the launch of Nicola Morgan's new book "Write To Be Published" which is based on her immensely popular blog Help! I Need a Publisher...

So I wandered over to the blog and found this post The Feet with a Thousand Followers promoting a little competition to celebrate the blog's 1000 followers mark.  A competition to write 150 words in any form or genre inspired by a photo.  I wandered again to find the results and was caught by surprise: maybe I had been led their for a reason tonight...

There in front of me was a little story called "Walk a Mile" by Patsy Collins and I'll share it with you here:


"Walk a mile in someone's shoes before you know them. That's what 'they' say. Maybe they're right; I wouldn't know.

I'd like to wear ballet pumps. Stand on the points of my toes, even if it gave me calluses. Or don flippers to swim in warm pools, or cold, dangerous seas. Skis sound fun, rushing downhill so fast my eyes wouldn't focus on the whitescape flashing by. Maybe I'd break my leg. I wouldn't mind the cast, not if it came after trying the skis. I'd have put on the boots of those Chilean miners and paced hopefully in the darkness, if I could.

Look at my shoes. Pretty, lots of colours. If you want to know me, put them on. Don't walk a mile. Or even a step. I can't you see. To know me, sit in my shoes and think where you'll walk when you've taken them off."


The story touched a nerve.
A raw nerve that I have struggled with since Eilidh's diagnosis:
I cannot know what Eilidh is feeling.  
I cannot put myself in her shoes, now or in the future. 
I cannot ever really understand how she will truly feel about SMA and her inability to walk.
And that hurts and angers me.
 
But in her story Patsy allows just a little glimpse, a little insight into "her shoes" and I had to thank her for doing that so I posted a comment - I hope that she gets to read it:
 
 
"I'd like to thank patsy for her entry...

i stumbled across this blog via the edinburgh bookshop and i'm grateful that i did.

my 2 year old little girl has spinal muscular atrophy and is wheelchair dependent.

she loves shoes: red shoes, purple shoes, shoes with flowers, shoes with bows; but my heart breaks when we go shoe shopping because she will never walk in them.

i take her perfect little shoes, unscuffed and unscratched, off each evening and wonder what it will be like to be "in her shoes" in years to come when she will be more aware of her disability and what she can and cannot do.


i want to thank patsy for placing me "in her shoes": i am sitting here wondering what it would be like to wear shoes that will never touch the ground, shoes that will remain imperfectly perfect, and i have to admit, i can't."

Thursday, March 17, 2011

Dreams


"Every great dream begins with a dreamer. Always remember you have within you the strength, the patience and the passion to reach for the stars to change the world"
Harriet Tubman

I have great dreams: they are buried deep within me, however.
I think that sometimes they try to burst out...

I want to change the world.
I'd like to make a difference:

But then I pause for a moment
And think
"Me? I can't do that! Don't be silly!"...
And the dream is gone...

Today I need to remember that I do have the strength, the patience and the passion, that I can achieve my dreams and they are within my reach; I just need to wait for the right time...

Wednesday, March 16, 2011

Hugo to join the Family!

Hurrah! Hugo is ready...
Hugo is a little mouse whose story has been told before
Find out more about him on his website here... check out the photo of Eilidh on the homepage!
And here is the email that Bella-Bear received today...


Hello Bella-Bear!

Sarah has told me all about you and i am very much looking to meeting you and Eilidh! It sounds like you have a lovely home and a wonderful family, and i'm so pleased to be coming to live with you in Scotland, it will seem like a very long journey from Yorkshire! I am sometimes a little shy at first, so i might be in need of some of those great big squishy cuddles!

I'm so pleased to hear that Eilidh will be soon getting her very own Whizzy Wheels! Sarah is hoping to post me within the next couple of days so that i get to you in time for when Eilidh gets her new wheels...
I'm very much looking forward to meeting you soon.

Lots of Love and cuddles
Hugo x x x

Ps. If you get chance, Sarah would love to here how i am settling in and if you do take any photos, she would love to see them as they are always very special x


Whooopeeeeee!
The Macfarlane menagerie has a new friend joining them and we can't wait...
Safe travels, Hugo...
Hugs & Kisses to Sarah before you leave...

Family "Rules"...

I'm not a "rules" kind of mummy but I do think that it's a good idea to have some house "rules" to live by and to grow by...

I have seen a friend with rules, amongst family pictures, magnets and colourful doodles, on her fridge...

Our nursery has rules for the little ones ..."don't run" "use quiet voices" ...

And then I stumbled across these gorgeously vibrant rules on NOTHS... the link to the creator "I Love Design" is here:





by I Love Design


 
And it got me thinking...

I would like my family to know that they are loved no matter what and above all else; that they can talk openly about anything at anytime; that they can trust and depend on each other: that they should do their best for themselves but for others, too; that they should be respectful of family, friends, and others at all times; and that we should live simply and humbly with joy and grace.

Quite a tall order perhaps but maybe "rules" - positive statements about how my family wants to look after and treat its members - could help our family get along even better and make family life a little bit more peaceful... 

And maybe our "rules" can become our "manifesto"... our public and clear declaration of principles and intentions... actually, I much prefer the word "manifesto" to "rules"... it sounds so much more positive... a word to truly live by...

Our little ones may well be a wee bit young but they both understand when they have done something naughty and I'd like them to know where the limits are and what's expected of them... they may well forget, they may well get distracted but hey! no one is perfect! D & I will remind them - and ourselves - and support them and love them and grow with them - and each other - just as a family should...

so our family "manifesto":

be polite
be kind & gentle
use quiet voices
pay with kisses
hug often
be honest
keep your promises
do your best
be respectful
love one and other
live with joy & grace


now just to turn it into a little pretty, stylish piece of wall art...












Thursday, March 10, 2011

Little feet...

oh, how I would love to hear the patter of 2 sets of little feet jumping down from their beds and running through to greet us with hugs & kisses on a sunny morning...






Wednesday, March 09, 2011

Some days...

Some days it just hits you
B.A.N.G!
Right in the middle of your heart.
It's not quite as painful as the first strike
But it's painful nonetheless
And it always catches me off guard...

There was nothing particularly bad about today:
the sun shone, the snow fell, the sun shone, the rain fell;
and I talked to various health care professionals.
The day was going well
And then
B.A.N.G!
I was in tears...

A mummy at the nursery:
Eilidh ran into her -
Not on purpose, I may add, I think that she just wanted past -
The mummy looked down at Eilidh and angrily said
"I hope that you have a driving licence for that!"
I'm sure that she didn't mean it nastily,
But I felt my heart being tugged.

And then a conversation:
The nursery are still getting used to Eilidh and her Whizzy Wheels;
They haven't had a little one so independently mobile in a wheelchair before.
I feel that it has been going well but I'm not sure that Eilidh's key worker is so sure.

It's difficult to try and get the balance between independence and what is best for Eilidh (in our eyes) and what is best for the nursery workers and the other children in the room.

Eilidh loves having people busy around her, she loves pushing buggies around and playing with babies: she wants to be a normal toddler and cognitively she is, but she is severely limited physically by her disability and this frustrates her so, so much. 

Eilidh is mobile thanks to Panthera and their amazing Micro chair which is by far the lightest on the market... she loves her chair and I love it too for what it has done for my beautiful little girl.  But she is fast outgrowing her chair... nursery want a chair more suited to their needs but this means that Eilidh will be unable to self-propel because the newer chair, the more suitable one for the nursery, would be too heavy for Eilidh to move...

So how to we find the right balance?
We are all right but today this weighs heavily on my mind.
I cry as D gets home.
It hurts so much:
I can feel my heart close to breaking,
"I just want her to be normal..."
I wish that we could wish SMA away...

Friday, March 04, 2011

"Words of Wisdom"

SMA kids, aka SMArtys as I like to call them, are inspirational...

I.N.S.P.I.R.A.T.I.O.N.A.L!!

SMA kids are
beautiful 
&
intelligent.
They teach us
Every day,
Leading like
Bright stars,
About
Life
&
SMA

Yesterday I shared Rebecca's Poem.
Today I'd like to share another...

Kevin is Ethel's Son.
He has SMA,
But he is not limited by this disease:
Instead he is limited by - and this is my perception - he is limited by us and how we, the world, see people with disabilities and special needs...
Kevin, please forgive me if this is not what you meant... poetry can be so, so subjective..)

Ethel is a leading light in the SMA World as is Lucy, her partner in crime, over at The Suite Life of Lucy and Ethel, where they share stories, have some fun, spread the word about SMA and other genetic conditions, and "are determined to help squelch the wrath of SMA".

So... Over to Kevin:




Weighted down by my limitations
Freedom captivates my heart.
Invokes its spirit into the deepest corners of my being;
But I am limited.
The four wheels that confine do not limit me,
Nor the muscle weakness I’ve always known.
What limits me is a world blind to its surroundings."



"Freedom captivates my heart."

My favourite line... it's something that I hope for... 

I hope and pray that Kevin, Eilidh and other children with disabilities and special needs will experience "freedom (that) captivates (their) heart(s)" and that we, the global world around them, accepts them for who they are: that we see them first and foremost, their beauty and their brilliance; that we learn from their strength and grace; and that we do not remain "blind to (our) surroundings".

We need to learn from our children, for they will teach us, not only about themselves, but about ourselves and about life, too. 

A life that is different from the norm (what is normal anyway?) but no less special or wild and free. 

Imagine that...


Thank you, Kevin: hold on to that freedom within you and never let it go, for it is so much a part of you and who you are...




Thursday, March 03, 2011

Rebecca

I don't know Rebecca.
But I do know that
She is 10 and has
SMA Type 2.

Rebecca wrote a poem
And I found it today
In a Gala Event Program
I had been sent.

It's a beautiful poem and
I wanted to share it:



"I know a place in your heart
Deep, deep down
Where the river flows
And the butterflies fly
Where the eagles soar
Above your head
Where you swim until you are content
The air will whisper
In your ears
Inhale and dance among the trees
The sky has a thousand colours
And the clouds look like cotton candy"



Rebecca, thank you for reminding me that we can all dream and fly, weightless from our worries and cares, content in the moment.