An Ode to a Special Dad

He’s the one she calls for, the Daddy she adores,

The one that she runs to, the minute she hears the door,

Daddy is her hero, he makes everything ok,

When he’s home, we’re altogether, she likes it best that way.

It’s not an easy job being Daddy to any child really,

But when they’re extra special, it becomes even more tricky,

The Dad is often the forgotten one, no-one ever thinks to ask…

How are you feeling? Coping? You always maintain your mask.

Behind the scenes you are vital, the one who holds us all together,

You’re the voice of reason, always there when I’m at the end of my tether,

You’re the one who calms us, makes it ok to just be,

But equally the Daddy who will fight every battle for his family.

How many times I catch you, that adoring look in your eyes,

So torn, so incredibly proud – holding back tears, trying not to cry,

Though she can’t quite say ‘Daddy’ – it gets muddled with her ‘blankie’…

It is with you, her hero, that GG is most happy.

An Ode to Mothers Day

Image result for mothers day image

So being a mum to Gorgeous Grace is a privilege and a huge pleasure,
The cutest grin, infectious giggle, GG really is a treasure,
The joy on her face when we race, or play horsey on the floor,
The cuddles I sneak,  I love to watch you sleep, you are so pure

Of course I find it hard sometimes and struggle with the guilt,
‘oh no’ they say, ‘it wasn’t you – it’s definitely not your fault’,
But I’m the one who made you and grew you in my tummy,
The one who gave birth, fed you – it has to be me – I’m your Mummy

People sometimes say ‘You wouldn’t change her – not for all the world’,
But that’s not true, I absolutely would make things better if I could,
Don’t get me wrong, life without you I could never ever contemplate,
With your siblings, my gorgeous girl, you make my world complete

You show me clearly everyday what is important in this world,
Time with you, to enjoy ourselves, together memories we build,
But the therapies and appointments they do get in the way,
We have to try, keep pressing on, and hope it pays back one day

The days you cry when I brush your hair or during physio,
it breaks my heart, I crumple inside, I wish it wasn’t so,
But then we put you in the bath or take you to soft play,
We feed you the cheese you love and suddenly everything is okay

I love the days when you’re on form and we spend time as a family,
The days you squeal ‘bumble’ when I put Mr ‘Tumble’ on the TV,
The days you snuggle up to me and we read a book on the sofa,
The days we play with baby and have fun and games together

Just keeping track of all you need is a mission in itself,
The paperwork and chasing up – I hope it all will help,
But ultimately nothing matters more than your happiness,
and that my darling girl will remain my personal quest.

The drinking challenge and not the one I expected!

When you have a child, you would never think,
One of the big battles, will be getting her to drink,
But that is what has happened and how it has been,
The challenge to get her to drink we could not have foreseen

With so many issues, in so many different ways,
Why ‘Gorgeous Grace’ would not drink, we could not say why,
But she clung onto her baby bottle, full of yummy formula,
Changing it, giving something new, was nothing short of a trauma

Health professionals always say ‘milk is considered food not drink….
She must take clear liquids – that is what we think….’
But we have tried, how do we do it? we’re all out of ideas,
New bottles and cups, new flavours to sup – it all ended in tears

A gently, gently plan we devised, the way we took it forward,
Half an ounce at a time we moved to cows milk from formula,
It took several months to get there, but get there we did,
Step one had worked, it had turned out to be a good tactic!

Step two was to gradually add water, little by little, to the milk,
Add too much at once and over us it would be spilt!
Perseverance every day, it finally paid off,
Half and half milk and water, it’s a step forward, we are chuffed

School have helped enormously, they put in a lot of effort,
Every day trying something new, even experimenting with temperature,
And now ‘Gorgeous Grace’ will even drink from a normal cup,
Blackcurrant or lemon, not too cold, from a cup she will sup

The impact has been significant – a lot less constipation,
And even more impressively – an improvement in concentration,
These steps an average child will just take in their stride,
For ‘Gorgeous Grace’ it’s a huge achievement that fills us with pride.

Introducing ‘Gorgeous Grace’ or GG for short

Oh such a sunny day, the date that she was due,
We welcomed the arrival of ‘Gorgeous Grace’ – daughter no. 2,
Although we didn’t know that day, our lives changed in every way,
We had no idea – our ‘Gorgeous Grace’ was here!

I’d had no major issues at all through the pregnancy,
The labour and the delivery, they were relatively easy,
With an APGAR score of ten, You fed and pooed so then…
Home we did go, we already loved you so.

The first 6 months it’s fair to say were a little tough,
Poor weight gain, ear infections – for GG it was rough,
We instinctively felt nervous, Health professionals reassured us,
You were so happy – why was Mommy so flappy?

It all changed overnight, when you didn’t learn to sit,
The first of many milestones that you would not hit,
The daily physio started, ‘Gorgeous Grace’, you just got on with it,
It wasn’t fun but your smile stayed on.

At just 9 months you joined the merry-go-round of the NHS,
The appointments, the referrals and oh my, so many tests,
Neurologist, genetics and so many other specialists and therapists,
But your smile kept us going, you are just so amazing….

We’ve read, researched, networked – to find out what we can,
The fight for all you need is hard but we just keep on,
Some say we do too much, we never feel we do enough,
But we’re on the case – our ‘Gorgeous Grace’!

At two and a half years old, the dreaded seizures started,
Terrified, petrified – it doesn’t scratch the surface,
The day of the EEG, it showed what we needed to see,
Epilepsy x 3 – our poor baby….

The list of issues, just goes on and on,
Now called ‘learning disability’ it doesn’t cover a tonne,
Sensory issues to poor muscle tone, a squint, hearing loss and misaligned bones,
And the challenges developmentally – it’s so much for you to deal with,

You were nearly 3 years old when you started to walk,
And now that you’re older, you are so desperately trying to talk,
Every day you try so much, so happy when we make a fuss,
You have come so far – you really are our star

The fight for everything you need – it just never ends,
The forms for DLA, insane they do us send,
A blue badge rejection, but the school place agreed for reception,
We just won’t quit because GG you deserve it.

The Footsteps physio programme has been great of course,
But your favourite type of physio is definitely on a horse,
Recently we have started Snowdrop, the audio CD makes my head go pop!
But GG you always try your best and make such good progress.

You are such a Daddy’s girl, so excited every time you hear his car,
Your big sister you adore – you always call her ‘Doo Dah’,
Then your brother you call ‘baby’, all part of our precious family,
We all adore you – our gorgeous Gracie- moo!

Our darling girl, you never cease to surprise us every day,
Your love of cheese and blankies – you like things your own way,
You love to be tickled, infectious is your giggle,
And you are so flappy when you are happy!

We have absolutely no idea what the future will bring,
No diagnosis, no prognosis, we know absolutely nothing,
But one thing is guaranteed, we will all be there by your side,
We will not falter – for our incredible, amazing daughter x