Thursday, September 30, 2010

Peace & Quiet

Yes, my minds is still whizzing
but
the house is peaceful
and
so very quiet.
The girls are at the park...
I have the house to
myself...
Oh, the sheer joy!

A close friend quotes herself

"It's a trial being so selfless."

I agree,
It's exhausting actually.
Mentally and physically exhausting...
I am desperately in need of some "me" time.
Some space in which to
stop
and think
and be at peace with myself amidst this life of discombobulation.
Amidst my family - as mad as a box of frogs they may be!
Amidst the whizzing of the Whizzy Wheels Fund.

So what am I going to do with this peace and quiet?

... update my blogs, organise the "Wheelie Good Night Out", arrange a dinner date, cook dinner, phone a friend, wash some clothes, tidy up the house, write some emails, twitter & tweet, facebook ...

You know what I mean?
The usual... nothing really... nothing for me ... no "me time"... nothing "nice"
but I will find pleasure in each moment...
and when my husband walks in tonight he'll say "what have you been up to today?"  And I'll reply "oh, you know, nothing really...."
but the house has been peaceful and I have known silence once more.

Imagine...


“Limitations live only in our minds. But if we use our imaginations, our possibilities become limitless.”

Jamie Paolinetti

I have an image in my mind of Eilidh in her Snappie.
She is happy - beaming in fact - and full of pride and joy.
I need to make that image become a reality and that is why The Whizzy Wheel Fund came in to being.
And now that I am actively raising money I need to look for a different angle, a hooky hook to catch people and bring them along on our journey with us.
I need to use my imagination and be a bit inventive and perhaps a little crazy, too.
And I think that I need to be a whole lot gallus...

gallus  adj. (Scottish)  bold; daring; reckless


So I am... letter and emails and tweets are being fired off at a rate of knots.
And all of the time I am remembering that possibilities are limitless...
I just hope that I don't offend anyone
or push my luck too far...

Wednesday, September 29, 2010

Oh, my goodness!

I have been neglecting you,
my safe haven,
my place for reflection.

But...
My head is spinning
and
whizzing
and
it
won't
stop.

So much is going on...
It's hapenning so fast and,
in nice way,
it feels as if it is
out of control...

The Whizzy Wheels Fund went live at 10pm on Monday night and since then we have raised a whopping £2504.96 for Eilidh's Snappie,
taking the total raised to £4014.96.

WOW!

And we've been mentioned on Fish's Web Site and Facebook page
and tweeted by Lorraine Kelly
and received media interest...

I am so overwhelmed though.
I never expected it to get so big so soon:
It feels slightly uncomfortable,
and yet I know,
deep down,
that this is the right thing to be doing.
For Eilidh.
We are being lifted high by our community
and I am so very, very grateful.

My mind is whizzing though...

Sunday, September 26, 2010

The good and the bad...

Good and bad happen to us all.
Few escape.
It's life.
Life continues.
A new start will come
From
Good and Bad.
We start over.
Making choices.
Living life.
Making the most of our time.
Going slowly.
Being kind.
Being wise.
Loving many.
Hurting few.
Enjoying the moment.
Life carries on.
Good
and
Bad.

Saturday, September 18, 2010

Snoring, snoring, snoring...

Now everyone snores...
Go on, just admit it!
I snored very, very loudly when I was pregnant...
D snores very quietly and gently... or at least that's what he likes to think!
Eilidh grunts and snores and sighs...
Everyone snores...

But as I expected - I am a doctor after all - Eilidh has Obstructive Sleep Apnoea which was confirmed by an overnight oxygen monitor on Monday. It isn't too significant but they are recommending a referral to ENT for a tonsil and adenoidectomy.  Eilidh has huge benign tonsils and that,  coupled with the lower power in her muscles of respiration just makes breathing a little bit more of a struggle when she is fast asleep and dreaming. 

Isn't it funny that we make so much noise when we are asleep and deeply content?

And on that note... I'm off to bed, to sleep the sleep of the blessed and, perhaps, snore a little bit too...
Night, night...
x

Friday, September 17, 2010

Trees and Kindness

People do care.
Despite the things going on in their own lives, within their own families, they take the time to think about us.

A parcel arrived from NZ today from a woman who became my surrogate mum during the time I lived there. A simple, kind woman who has always been so generous with her love. 

Inside the parcel was a book and a card.  Words and musings.

A gorgeous book full of trees and leaves of all different shapes and colours.
A book about the Arboretum at Eastwoodhill - what a beautiful and magical place! I never went while I lived in NZ, but so wish that I had: I think that I would have found a great sense of peace there (as I did in general in the land of the long white cloud).

I love trees.
Their roots firmly planted in the ground, they hold fast to their beginnings.
Their branches stretching and twisting upwards towards the light.
The first sign of buds in the spring,
The summer blossom,
The red and gold hues of autumn
And finally, the snow lined branches of winter.
The circle of life and the seasons within...

And just as the trees stand tall and firm, Eilidh enjoyed her standing frame today.  I looked at her in her frame and cannot believe just how tall she is!  Even taller in her shoes... She so made me smile today... she refused to let me take her shoes off all day - how proud she was of them!  And everyone noticed them too...  Gorgeous little shoes...

This is SMA...

Eilidh is 19 months old and we are still very early on in our journey with SMA...
It's been 3 months, 3 weeks, 16 hours and 25 minutes since we heard the words
"We got the results at 4.26pm. It's SMA 2"
and our world fell apart.
Her story is here...

We are taking each day as it comes,
whatever life may throw at us,
whatever the future holds for us.

This blog is in its early days too.
It's incomplete and a lot of the facts are missing.
I'm trying to stay away from the facts.
I'm trying hard not to look at research.
I'm trying so very hard just to be Eilidh's mummy...
Why the "just"?
Because I'm a doctor... A GP with a specialist interest in Palliative Medicine.
I need to keep in the here and now,
taking in each moment and finding the joy in my beautiful little girl.
I can't think about the future,
the "what ifs..."
Sure, she has SMA: a disease which robs her of her ability to walk
But she makes up for it in so many other ways...
She is beautiful and cheeky and strong willed and so very bright...

Eilidh is our guiding star. She shines a light upon us when days are bad.
Eilidh will teach us about SMA and how to live in the day to day.
I am blessed to have her in my life...
Our family is so very blessed.



So why have I decided to talk a little about Eilidh today?
Because their is a SMA BLOG PARTY going on!
I'm a little late but I didn't want to miss the party altogether.
I want to join it and embrace the party goers
because, you know what?
we belong to an awesome club
and my family wants to be an active part of it!

So where is the party?
and it's been going on for a day now - they know how to party!
Why are they partying so hard?
They want to raise awareness of this disease and raise $20,000 in the process.
What do you have to do?
It's simple...

PLEASE VOTE:

■You can vote once EVERY DAY from now until September 29th at 5 PM EDT
■Go to VoteForSMA.com, select the Gwendolyn Strong Foundation, enter the two security words, check the Official Rules box, and then click “Vote Now!”
■That’s it! It’s really that simple


■Don’t forget to add your name to the DailyVoteReminder.com list so you don’t miss a $20K vote.


■And…don’t stop there — SHARE! 


And if you have visited today... PLEASE leave a comment so that I know that you have been...



And here's to life with SMA, may we all be blessed and loved upon this earth.

Wednesday, September 15, 2010

Whoopeeee!

I was right to place my hope in humanity...
I am grateful for all the DragonMobility and their "family" have to offer...
Thank you...

The sun is shining...

and I have an afternoon to myself.
I need to
live
each
day
as
it
comes
and be
so
very
grateful...

I have worked in Palliative Care - it's probably where I was most happiest in my work. 
People struggle with that concept...
Happy surrounded by death?
But Palliative Care is infinitely more than death.
It is about caring for the living and their families and friends.
It is about help control their symptoms, their pain.
Pain is not physical but also spiritual too.
It's about helping a patient achieve as good a death as possible.
For a good death is possible...

Why this post today?
I have just finished a book that looks at illness in a child.  It's not the first time that I have read it and it won't be the last. It touches me in such a tender and memorable way.   It will uplift you and move your soul, reminding you to live every moment of your life, no matter the time that you have left on this beautiful planet.


by Eric-Emmanuel Schmitt

Tuesday, September 14, 2010

Tears

the smallest thing can make me cry.
like a memory
of Niamh in her little flowery pjs.
Eilidh wore them tonight
and I instantly saw
Niamh walking and running in them.
In contrast
Eilidh was cute and serene
and graceful in her stillness,
but I still cried
silent tears

Monday, September 13, 2010

Hospital appointments

I HATE hospitals... but more about that at a later date...

Another appointment today, this time at a combined neurology and respiratory clinic...
I always feel nauseous on approaching a hospital... old habits die hard!

Today I felt that same nausea as we walked to the Out Patient Clinic where we sat for 35 minutes waiting for our appointment.  Me holding Eilidh tight in my arms as though protecting her from the unfamiliarity of the hospital but actually protecting and shielding myself from my own anxiety.

At last her name was called...

The small consultation room was full of tired health care professionals at the end of an over-running clinic.  It was more or less a "meet and greet"... a quick synopsis, a quick listen to Eilidh's chest and a look at her huge benign tonsils as she screamed at the consultant. 

We need to be proactive:
always thinking that a chest infection is a possibility but not a probability;
early intervention with breathing exercises and chest physiotherapy,
and an awareness that the team is there to contact as and when we need them. 

Assisted ventilation?
Yes, it may be needed in the future but we are here and now and Eilidh is well in herself. 

Does she snore? I smiled... Definitely... like a tractor ploughing a field (my brother snores like that and has done from an early age :))... that, combined with her large benign tonsils and a tendency towards weak respiratory muscles, means that she could well have a degree of obstructive sleep apnoea (which, incidentally I have questioned and suggested at previous appointments with neurology).  A pulse oximeter was the answer.  This was quickly organised and a mini sleep study, in the comfort of our own home, was to be undertaken, and we were dismissed.
I left the consultation a little dissatisfied but happy that Eilidh was doing well.  I got the feeling that we were a little short-changed and rushed through our new patient appointment because it was the end of the day and the clinic had run considerably over.  That wasn't our fault though, was it? We should have been given the same care and attention as the first person on the clinic list... 

But maybe I expect too much? 
Why shouldn't I though? 
Eilidh is my daughter,
she is my life
and I expect everyone who comes in contact with her,
who comes to know her and love her as I do,
to do the best for her...

The learning point from the consultation? 
Rough and tumble play is good for her breathing...
Tickling is a great breathing exercise...
Now, we all know SMArty LOVES being tickled...
and with that final thought I smile and the world is a better place as I can hear her little giggle in my head...
a gorgeous and totally infectious Eilidh giggle... 

"Tell me..."

I was writing a card today
to put in the post
overseas.
New adventures lie ahead there
and
I
was wondering
what they are ...

A while ago I stumbled across the quote -

"Tell me, what is it you plan to do
with your one wild and precious life?"
 
and I often stop to reflect upon it.  I haven't for a long time now though, too caught up with life and living, but today it suddenly sprung to mind...
 
Am I doing enough in my life?  In my "one wild and precious life"?
 
The answer came to me...
 
"Live it.  Enjoy it. Be bold and passionate.  Be strong."
 
I realise that I am trying to live by this every single day... I don't need to be more specific... this is the undercurrent that keeps me afloat...
 
 


The Summer Day

Who made the world?
Who made the swan, and the black bear?
Who made the grasshopper?
This grasshopper, I mean-
the one who has flung herself out of the grass,
the one who is eating sugar out of my hand,
who is moving her jaws back and forth instead of up and down-
who is gazing around with her enormous and complicated eyes.
Now she lifts her pale forearms and thoroughly washes her face.
Now she snaps her wings open, and floats away.
I don't know exactly what a prayer is.
I do know how to pay attention, how to fall down
into the grass, how to kneel down in the grass,
how to be idle and blessed, how to stroll through the fields,
which is what I have been doing all day.
Tell me, what else should I have done?
Doesn't everything die at last, and too soon?
Tell me, what is it you plan to do
with your one wild and precious life?

Mary Oliver

Doggone Tired...

I am so tired at the moment
and it has a knock on effect on my mood...
I'm trying hard to be upbeat.
I'm trying hard to look after the little ones
and D
but,
actually
I need to look after myself.
And so
today,
my magnificent Monday,
is a day of rest.

Saturday, September 11, 2010

Fug...

I'm in a fug...
Not literally
But mentally...
Down days
with the edge taken off.
No sparkle to greet the day.
I know that it will pass;
of that I am confident.
I just have to emmerse
myself in
my family
and fun
and laughter.
Fug is a good word...
It's an ok state of mind...
Temporarily...

“I know God will not give me anything I can't handle. I just wish He didn't trust me so much.”
Mother Teresa

Thursday, September 09, 2010

Letters, Cards and Postcards...

Our mailbox was full today.
Catalogues. Bills.
The usual boring envelopes of day-to-day life.
But amongst the junk
I spied handwritten envelopes
addressed to me.
Handwriting eludes to something
Interesting
and
Personal
and
Potentially Inspiring...

2 postcards for Niamh.
1 letter.
1 card.

They all made me
Smile
in different ways.

For D & I
There were words of comfort and empathy.
Words of understanding and love.
Well rehearsed words
and
Words from the heart and soul.

People can touch your heart when it is least expected.
I was right to put my hope in humanity...


p.s. the card made me smile the most, dollface!

"Whenever you're uncertain
And you don't know what to do
The Cow of Wisdom always answers
'Just chill out... and MOO'"
Edward Monkton

Wednesday, September 08, 2010

Niamh's First Steps

D found a file today
and sat watching it with
a smile,
"come and see, sheonad..."
he called.
I stood behind him
for a moment
but had to walk away
to cry.
I'll never get to see Eilidh's
First Steps,
Will I?

Tuesday, September 07, 2010

Squiggles arrives...

Ok, I may be grateful for the day,
for the rain that is falling,
for the cooler weather,
for my time at Waterbabies...
But it's still a sad day
of screaming and Squiggles,
of shouting, tantruming weans,
of sadness
and
down heartedness:
and I'm going with the flow.
Hopefully my dip in the water will clear the sadness
But I now know that
it's important
To
FEEL
it...

Monday, September 06, 2010

Home sweet home!

Oh, how I have longed to say this...
We have a home.
We have bought a house!
Whoopee!


"The ache for home lives in all of us, the safe place where we can go as we are and not be questioned."

Maya Angelou

 
For two years now we have been looking for a home to settle down in.
To feel safe and secure in.
To raise our children in.
 
I have been yearning for this moment, perhaps more than David.  Is it a girl thing?  A maternal instinct?  I'm not sure, but I firmly believe that "Home is where the heart is".
 
In my home, I am safe and secure.  No one asks questions of me.  I am me and my home reflects that.  Wherever it is.  Over the years I have come to realise that it doesn't matter what the house looks like or where it is - well, to a certain extent!  It is what is inside that matters, that counts, that makes it a home.  Any house can be my family's home for we will live within the walls and fill the house with love and joy, laughter and silliness for years to come.
 
We have bought a house - whoopee! whoopee! whoopee! 
And soon we will have a home...

Gratitude

"Gratitude is not only the greatest of all virtues, but the parent of all others."
Cicero

A long time I ago I suggested to someone, whose life had been turned upside down, to keep a gratitude diary, realising that if we could see the beauty in the smallest object or gesture and feel thanks for it that, perhaps, our souls would feel a little lighter...

More recently the same person reminded me that I should be doing the same, taking note of those special moments, those little objects, those memorable gestures that make me smile and think

"oh, it's good to be alive!"

On reflection I think that I am a very grateful person and I do take time to give thanks, but not in a formal, structured way.  Not in a way that I can look back and say

"WOW, what great days these have been!".

Not in a way that I can be grateful for being grateful...

So from today I am going to record my gratitude for moments in my life.  Sometimes I may share them, sometimes I will keep them close to my heart: today here are my reasons to be grateful:

Eilidh's cheeky, mischievous smile which lights up her face, and in turn my own,  just when I'm having a sad moment - it's like she knows...

Niamh singing "Puff" totally out of tune but with such vigour and confidence - this is how she approaches life... you go, girl!

My beautiful sunflowers which Niamh and I have grown and tended to from seed - they light up our garden and shine on my soul...

D, my beloved and my friend, with whom I walk through life...


"Gratitude makes sense of our past,
brings peace for today,
and creates a vision for tomorrow."
Melody Beattie

What are you grateful for today?

Sunday, September 05, 2010

"I don't know what to say"

I've been thinking about this...
"I don't know what to say"
It's been used frequently over the last few months.
Either directly or through a third party.
Directly, it's OK.
I can accept it
Because often enough
We don't know
What to say.

But, actually
It hurts
If it's through a third party.
Especially if we have had no contact whatsoever from the other person.
A family member.
A friend.
A colleague.
Surely to say something is better than to say nothing?
To show that you are thinking of us...
To show that you care...
You don't have to understand what we are going through.
You can even admit it:
"I can't begin to understand what you are going through..."
"I don't know what to say, but we are thinking about you..."
By text, letter, email.
By card or flowers.
Just something...
To let us know
That you are thinking about us...

But what if you say the wrong thing?
Will we be hurt?
Will we judge you?
Maybe.
Perhaps.
But we will know that you are there for us
And that is all that really matters.
Because we are hurting.
Our lives have been turned upside down...
And sometimes
We feel so very
Alone.

And if you do say the wrong thing?
Is it necessarily wrong?
No.
Because it's difficult to know what to say...

Friday, September 03, 2010

From Personal experience...

I have been emailing Ruth from DragonMobility about her work on Early Mobility as, of course, with my scientific brain, medical training and interest in evidence based medicine, I'm interested to learn more.

Today Ruth got back to me and added this:

"On a personal note, I have been following your blog and I just wanted to say that the shock you feel now about Eilidh's diagnosis will ease. The grief you feel is totally understandable and reasonable (right?), but you will get though it. Eilidh, having never planned any trips up Ben Nevis which she must now forfeit or set her heart on being a deep-sea diver, will know inherently that this is ok and she will help you to realise that too. (My mum had hoped I would win Wimbledon, but as I don't much like anything you have to practice eight hours a day, it was never going to happen anyway. My sister, also, has nothing to do with the Lawn Tennis Association although she does much better than me with a racket.)

I can't speak for Eilidh aged 30, because she will become a different woman than I am, but from this 30-year-old with SMA I can tell you that (even though we would all much rather have no difficulties in life at all, but who gets that?!) I am grateful to have been dealt this one. SMA is quite simple really - walking and breathing, while fundamental, can be augmented. Loving and thinking, causing trouble and generally living - they all work fine :) It is the human condition to hit barriers, but this one presents definable, soluble ones that are not too devastating to the other aspects of life. There will always be times when you (and Eilidh) feel sad about what she cannot do but overall you are likely to mostly feel proud and lucky. Hang on in there."
So eloquently put, it reminds me that my perceived future for Eilidh, for my family, doesn't exist: it never did.  We have a new and different future which is real and full of possibilities.  It is yet to be lived and we can start each day a new.  Eilidh will grow up with SMA - as will Niamh - and D and I will adapt... with Eilidh at the helm, reminding us how blessed and grateful we are.  Thanks, Ruth for letting me share your email.

Hug in a bottle

Today I was treated to an afternoon at Turnberry Spa.
The sun was shining, Ailsa Craig shrowded in mist.

First, a coffee in the Grand Tea Lounge - relaxed refinement at its best with views, on a good day, over to Arran and Goatfell, Holy Island, Ailsa Craig and perhaps even Ireland.  A place to relax and dream in, to spread your wings wide and soar above your trials and tribulations.

And then to the Spa - divine decadence at its best in the hands of the most professional therapists that I have come across.  I was shown to my therapy room and asked what state I wanted to achieve through my therapy today.  Easy; relaxation.  My therapist asked me how things were, balancing motherhood and work: I cried as I thought of my life, far removed from this small peace of paradise in the Spa.  This deep-seated pain surfaced:
"Things aren't too good"
"Do you want to talk about it?" she asked. 
The tears fell. 
"We've had some bad news about our youngest daughter... She's going to be wheelchair dependent."
There was a pause, "You will find the inner strength.  You will find strength from your family and friends.  Your daughter is still, and always will be, your daughter and you will love her.  She will always be beautiful."
How true her words are...
There was very little said after that. She touched and massaged me with such tenderness, using the Restorative Bath Oil which she described as a "hug in a bottle".  I relaxed and entrusted myself to her, gradually dozing then falling into a sleep which, although brief, left me rested.  She woke me gently and took me through to the relaxation room where she brought herbal tea, touching me as she said goodbye and said "take care". And I knew that she meant it, too.

So much can be said through human touch.  It is not simply about the physical connection, skin to skin, between two people but also the human connection.  In this day and age we often forget about the need for this connection, choosing not to reach out to others, and yet we can convey so much through the laying on of hands.  Love.  Intimacy. Empathy.  Reassurance.  A powerful and simple act which affects, and can heal, both parties, physically, mentally and spiritually.  With each touch we realise that we are giving ourselves to another whatever the sentiment we mean to impart. 

Today I think that my therapist gave herself to me.  I think that she felt for me and with empathy and reassurace she wanted to ease my worries and calm my soul.  She did and I am so grateful for the 2 hours I spent in her care.

I finished my day with a rare tea from the Yunnan province in China ... Butterfly in Love, delicate twists and bows of shimmering silver tea with a light floral flavour... the perfect, delicate end to a perfect day of physical self-love.

Today I realised that I deserve to be surrounded by love...
my "hug in a bottle",
with a little human touch,
and, lastly my comforting cup of tea - and little piece of carrot cake!...

Thursday, September 02, 2010

My uplifting muse

I met with her tonight.
Shopping,
coffee
and cake.
She lifts me high,
inspires me
and challenges me.
She warms my soul.
I don't know where I would be without her.
She's a superhero...
I just wonder what her costume would look like?

"To my amazing god-daughter. Love Godmummy. xx"

A huge ray of sunshine dropped through my letterbox the other day.
I recognised the writing and couldn't wait to open it...
A square yellow card:


"those who bring
sunshine into the lives
of others cannot
keep it from themselves"
james barrie
and inside some inspiration for a "Godmummy Fun Fund"...

"(for) when you need a little 'pick-me-up' you ... use it for:
special bath smellies,
coffee and cake with a friend,
that little something
you don't need,
can't justify
but want
just cause you deserve it!
I send it with love and positive thoughts for the not so good days.  Enjoy..."

I sobbed huge tears.
Tears of joy.
Tears of sadness.
I miss her so very much.
My godmummy - and I know that you are reading this! - means the world to me... and I am so very grateful x

Wednesday, September 01, 2010

Peer sadness...

Coffee with a friend this afternoon - yes, I know...
Motherhood is just one long coffee morning...


catherine colebrook's mugshot

Coffee and a catch-up with a friend - the first one we've had since Eilidh's diagnosis.  The first time seeing her little boy, who is only 3 weeks younger than my little girl, since SMA came into our lives...

It was difficult.  Eilidh's little peer... and he was trouble personified! So able and active and cheeky.  Running and jumping, climbing and rolling.  Wee Clarks shoes with lights flashing with his every footstep.  Exploring his world. Toddling around.  Challenging himself.

It made me sad.  I miss having a toddler getting in to trouble: I wish that I had cherished Niamh's troublesome toddler years.  I know that Eilidh will have wheeler fun and bump into things and finally be able to reach up high and pull things down and chase after her sister.  I know that she will be able to make her own mayhem but for today I am allowing myself to mourn for my toddler lost...