Sunday, January 30, 2011

A Difficult Night...

Friday night was The Wheelie Good Dance in my home town...

I grew up in East Lothian.
It will always be my home
Wherever I am.

My family...
We are part of the land.
Part of East Lothian life.
We breathe the air and walk upon the fertile ground.
We know the people.
We are them.
They know us
And they know me.

And yet on Friday night I felt like a stranger.
In my home town,
Encircled by friends,
With my husband by my side.

People had gathered to help us: D and I, Niamh and Eilidh.
We had asked: we had put our pride to the side
And asked for help.
And they came.

They came to support us all:
they wanted to help in some way;
they wanted us to know that they are there for us.
But knowing this didn't help.
I felt awkward; 
I felt that all eyes were on us.

It was the reality of Eilidh and her Whizzy Wheels
That hit me the hardest
And the tears fell.
People watched them fall:
Friends and strangers
Saw me,
Raw and in pain.

Overwhelmed by events and emotions, love and support,
I bend my head low and left:
I am so very tired of being big and brave...
Even though people think of me as

A difficult night,
full of mixed emotions
BUT an amazing success
and a totally humbling experience.
So many people to thank...

All in all?
I'm glad that I went.
I'm glad that 2 old friends cared enough to organise the night.
I'm glad that I put my belief in people...

Wednesday, January 26, 2011

Happy Birthday, Eilidh!

Today is Eilidh's 2nd Birthday

"Happy Birthday to you,
Happy Birthday to you,
Happy Birthday, dear Eilidh....
Happy Birthday to you!"

To be honest, I prayed today that she will get to experience many, many, many more...
Not very celebratory perhaps, but true...
I am glad that we do not know what lies ahead of us, but I do know this,
Eilidh fills my world with insurmountable joy.

Today was no exception...

The moment of realisation:
"Hey, it's my birthday!"

Her rendition of " 'appy 'day tooooooooooooooooo you"

The fun of face painting

Her new favourite word... surprise, surprise;

The blowing out of her candles time after time
(and I am so proud that she can blow them out with all her puff!)

Her whizzing down the flumes

Her every smile and mischievous grin.

She delights me.

My heart is full of delicious love and pride for my
cheeky 2 year old.

She delights her family and fills us with joy and pride:
our lives are enriched by her presence...

Happy Birthday, my sweet love.
love & hugs
now, always and forever

Thursday, January 20, 2011


Within my family, my marriage, we ask each other for support.
We ask our family and friends for their support, whether it is emotional or physical.
Rarely, so very, very rarely do we ask for financial help because we are proud - and stubborn - and when money is involved the dynamics of a relationship can seemingly, or unseemingly, change.

Since Diagnosis Day we have found ourselves asking for financial help by applying for DLA and applying to Charities for funding for the Snappie.
Since Diagnosis Day we have swallowed our pride and asked for financial help in such an open and public manner by going live with a blog, raising money for Eilidh's Whizzy Wheel Fund.
We received small donations and sizeable donations, from family and complete strangers, from near and far and in 7 weeks and 4 days we raised over £20,000.


We are lucky.
We are not on the bread line.
We have brains in our heads and shoes on our feet.
We won't struggle but we will find it a little more difficult than we probably imagine.

Others families are not so lucky;
Financially or emotionally.
They may not have an extended family to support them.
They may well not know how to access help or "play" the system.

Circumstances can also change.
For better or for worse.
No one knows what lies ahead for themselves or for their family...
It's probably just as well really.

I had never really thought about how much it must cost to raise a disabled child; and now, slowly, it is becoming apparent.
To date we have bought:
£1,500 for the Panthera Micro
£19,908 for the SnapDragon - fund raised for through Eilidh's Whizzy Wheel Fund

Now, of course, we had the option of not buying these, of leaving Eilidh dependent entirely on others until the age of 3, but we strongly believe that Eilidh's independence is important enough to fight for.
Her independence is as important as the independence of other children in similar situations.
Hopefully, in the not so distant future, we'll be able to help others, too.

So how much does raising a disabled child cost?

Whizz Kidz published generalised figures showing the cost of raising a disabled child - the Fast Forward Fact Sheet can be found here:

It costs on average three times as much to raise a disabled child as a non-disabled child.
26% of families with a disabled child in the household live in poverty, compared with 20% of households with no disabled children

84% of families with a disabled child are in debt compared to 47% of households with no disabled child

I'll stress again...
We, at this moment in time, are one of the lucky families.
But it is important for us to fight for those who are not as fortunate as us, to help in any way that we can.
And I am sure that we can...
We just need a little bit more time to work out what we can do to help .

Tuesday, January 18, 2011

Monday, January 17, 2011


But why did we need financial help?
Anyone on the outside looking in would see a family who had it all...
2 parents:
1 working full time,
1 working part time
she's a Dr, for goodness sake!
They should be fine...
They'll cope...

But will we?
Not that I'm going to go into details
Because it's no one's business but ours.
Suffice to say that we can not afford
to move into a suitable house
make adaptations
buy a wheelchair at £19,908
buy an adapted vehicle
pay for additional equipment to enable Eilidh to have fun and be a toddler
still live a normal life...

And there was the issue of my work...
With SMA in the picture, with a disabled daughter, my home life took on a whole new meaning and I wanted even more to be there for my girls.  Yes, I need to work because it's part of who I am, but it's not important to me at this time in my life...  
So I handed in my resignation and, as of 25th February I'll be a stay-at-home-mum until we find our feet... 
We will put ourselves under a little bit more financial pressure but this is the right decision for my family... I am sure of this.

However, even having faith in my decision, my family is left wondering how an earth we will cope...
It's stressful but I know that we will.
With the love and help of others...

We applied for DLA to help with everyday care.
We asked for charitable contributions.
We placed our belief in people and we raised the money for Eilidh's Snapdragon.

We'll be ok.
I hope...
No, I'm sure.
We will be ok.
More than ok.
So, so much more...

A moment of real realisation...

Shortly after Eilidh's diagnosis it was suggested that we apply for Disability Living Allowance (DLA) which is a tax-free, non-means tested, non-contributory benefit for the under 65s to help with aspects of personal care.

We were told to apply but to wait for help with the forms as they are known to be a minefield of questions :
A Social Work Care Assistant would help us...
But she was off sick...
We'd have to wait 6-8 weeks to see her...

I'm glad that we didn't wait...
It took 16 weeks for a Social Worker to contact us...
With a little bit of experience of filling out the forms I decided that I could do it without any help.

Yes, the form was quite frightening
it wasn't the form but the realisation that our futures had changed,
that SMA was part of our forever,
that we were carers,
that our beautiful little girl was
How can this be true?

Suddenly we had the certainty of diagnosis
But our future was so, so unfamiliar:
I had no idea what the future would hold...

I knew that Eilidh was going to be more dependent on us,
dependent on our family and on, to a certain extend, society too.
No matter how independent she would be, this would be achieved with the help of others...

My daughter is disabled...
We are her carers...
How can we do this?
Who will care for her when we are gone?

Filling out the DLA form was so much more about facing our fears and coming to terms with the realisation that Eilidh was disabled and that we needed help to care for her and to help her be the best that she could be. Not just financial help, but help emotionally and physically too...  We needed to believe in people... 

Head in the Sand...

You may or may not be aware that the Disability Living Allowance is under reform.
We are new to DLA - just as we are new to disability - and, if I'm honest, I'm not very sure how any changes will affect us, but thousands of others are very worried about how they are going to be affected...

I have my head buried in the sand at the moment, not really thinking that this involves us, BUT it does!  So I'm going to take a little time to look at DLA this week, to take a little bit more of an active interest into issues which will surely become much, much more important to us as we come further to terms with our future living with SMA.

Saturday, January 15, 2011

I promise...

"I promise to give you the best of myself and to ask of you no more than you can give.

I promise to respect you as your own person and to realize that your interests, desires and needs are no less important than my own.

I promise to share with you my time and my attention and to bring joy, strength and imagination to our relationship.

I promise to keep myself open to you,
to let you see through the window of my world into my innermost fears and feelings, secrets and dreams.

I promise to grow along with you,
to be willing to face changes in order to keep
our relationship alive and exciting.

I promise to love you in good times and bad,
with all I have to give and all I feel inside
in the only way I know how, completely and forever."

dorothy i cogan

Friday, January 14, 2011

6 years...

6 years...

Traditionally Sugar and Iron,
With a Modern twist of Wood,
and a Hint of Love and Modicum of Reminiscence,
Means that
Today is our
Wedding Anniversary!

"I have found the one whom my soul loves"
Song of Solomon 3:4
Amidst the chaos of this morning's rush
cards were opened,
tears shed and
"I love you so much..."s exchanged. 
A momentary kiss and
whoooosh they were gone...

"Happy Anniversary"

Our wedding day was, quite simply THE best day of my life...

I knew deep in my heart that this was the right thing to do: I had no doubts, no hesitations.  I was at peace with the decision that I had made and was walking towards a wonderful future with D, the man whom my soul loves.

We took vows that day:

"To have and to hold, from this day forward, for better, for worse, for richer, for poorer, in sickness and in health, to love and to cherish, 'till death do us part"

And here we are, six years on, and those vows still resonate strongly; probably more so now than ever as we have struggled with the most difficult year of our marriage.  But we are growing stronger and our love for each other is surely the foundation of this strength.

Our anniversary cards go some way to convey our  feelings: we sometimes struggle with finding the right words and use the words of others as a starting point.  This year's cards are so very poignant...

From me to D:

"I love you,
I love you with a love
that will not die
till the sun grows cold
and the stars grow old"
William Shakespeare
From D to me:

you find yourself
in jail,
a good friend will be trying to bail you out.

a best friend
will be in the cell
next to you saying
'damn that was fun!'"

Anthony Lopez

Yes, this year has been difficult, but damn! we've had some fun along the way;
Together, with love as our foundation.

I love you so very, very much, D.

Forever more...

Wednesday, January 05, 2011

Ups & Downs...


Eilidh's fairy godmummy had a
this morning -

I am so,
so very
excited for the

(yes, a unexpected
little baby girl)
arrived nearly
3 weeks early
after a trip to triage
a curry!

Welcome to the world, beautiful baby girl!

I cannot wait to hold you
cuddle you
and show you this
that has been
by your arrival
and I promise
to help
you from the
worst of weathers


On the flip side,
the oh-so-low flip side,
we heard today that we ARE both carriers
for SMA:
it's hit me harder than I expected -
probably because I am so very broody -
and I cried huge tears of sadness.
The loss I feel;
the opportunity
for a.n.other child,
a bigger family -
it all becomes so much harder now...
I was so, so, so very silly to think
that we could be one of
the 2% of cases where only 1 of us is a carrier...
Oh! to be optimistic....

But today is not the day to sit and dwell,
For a new baby has been born.
An ever radiant possibility
Upon this earth...

Hello, little one
congratulations to your mummy and daddy

Tuesday, January 04, 2011

Broody Mother Hen...


I'm like a brooding mother hen!

Niamh 3 years 9 months and 22 days...
Eilidh 1 year 11 months and 10 days...
+ the risk of SMA...

A. N. Other?
That is the question I am asking myself.

There is nothing like a batch of wonderful friends
To stir the maternal ache inside my heart.
The newborn baby:
10 perfect fingers
10 perfect toes.

The unconditional love that you feel in that
That you
Upon your
Newborn baby.

A brand new life.
An ever radiant possibility.
Welcome to this Wonderful World!

I had always thought of myself as a
Mummy to

D had always thought of himself as a
Daddy to

We have thought about this
Many times since
Diagnosis Day.
Mulling it over.

I immediately wanted no more.
D instantly wanted more.
"Another would be lovely...
A brother would be nice...
A friend for both of them...
Perhaps a dog would do..."

But a 1 in 4 chance of another child with SMA... a 1 in 2 chance of a child carrying the SMA gene... a 1 in 4 chance of a genetically "normal" child...

We don't even know if we are both carriers.  We haven't had our genetic results back yet...

There is a tiny chance, up to 2% , that Eilidh is a de-novo mutation and that only one of us is a carrier...

A chance that Eilidh is a new SMA conceived in love...
A chance that we could have more children naturally
With no more worries of SMA...


So what happens now?
What are our options?
What did we discuss at our genetics appointment?
Watch this space