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.

Being undiagnosed….

Being undiagnosed, we didn’t expect, to be honest it was quite a shock,

Whenever you tell other people, they give you a puzzled look,

Medical science does not know it all, even in the 21st century,

Despite best efforts and lots of tests, Gorgeous Grace remains a mystery

Not knowing what caused GG’s condition, creates a number of problems,

Firstly, people don’t always believe you, at times we have been shunned,

Every parent of a disabled child, fights every step of the way,

But with no label, no box to tick, it’s tougher than I can say.

Even medical professionals have said, ‘come back when you know what’s wrong’,

How I wish for GG’s sake, we could wave that magic wand,

An undiagnosed genetic condition is the most we think we know,

A better description, more information, we wish we had to show.

‘What difference does it make?’ many people may ask,

The challenging forms and explanations, already a monumental task,

Get even bigger, even worse, without a medical diagnosis,

School applications, equipment requests, travel insurance and the rest.

For Gorgeous Grace we try to focus on what we think will assist,

Not really knowing, but still pursuing that elusive diagnosis,

The decision to have another child was so hard to make,

No tests, no known cause, it was a brave step to take

We looked at all available info and were told the risk was small,

And when at last new baby arrived just fine, it was worth it all,

But ‘stress’ does not begin to describe the 9 months of pregnancy,

The extra scans, so many scares, but a healthy boy is he.

The worst has been when people questioned if there was really something wrong,

As if, as her mum, I would make it up, sing such an unhappy song,

There is enough to deal with, without other peoples doubt,

Head held high, take deep breaths, and if we need to we will shout!

The guilt we carry every day, despite following all guidance to the letter,

The fact I didn’t drink, eat blue cheese whilst pregnant, doesn’t matter,

We didn’t drop her, no accidents, nothing – not the slightest bang,

But it doesn’t stop the guilt and constant wondering, what did we do wrong?

One day in passing another mum mentioned a support group called SWAN,

Syndromes without a name, I thought – oh, it’s just another one,

How wrong I was, I could never have guessed, how important they would become to me,

An amazing group, all in the same boat, the fabulous SWAN family.

What matters now, what we want to know, is what the future will bring,

For Gorgeous Grace we want to do our best, to plan and organise everything,

No matter what, a name, label or not, we hope things will become clearer,

Genetic research, identifying unique conditions, every day brings us nearer

A diagnosis would mean a lot, it would be just amazing,

Most importantly, we might find a cure, that’s what we keep hoping,

To help GG, to take away the challenges and strife,

To give us an idea of the future, the possibilities for her life.

Being big sister to Gorgeous Grace

She used to call you Doo Doo so that’s what you answered to,
Now she has named you Doo Dah and still calls you that – so far!
You are the precious big sister, the one that she admires,
She wants to be just like you, she copies you (or at least she tries…)

The two of you, heads together, you play so beautifully,
The hours and hours of fun and games, it makes us smile to see,
The times that you make GG giggle – roll around in glee,
The cuddles that you give her, make her happy – that’s easy to see.

The times she’s angry or tired and pushes, hits and kicks,
We see the confusion in your face, we know it’s hard to take,
But you understand that GG’s different and cannot help herself,
You forgive, you forget and say ‘Oh Grace’ with a smile on your face.

When GG is sad or poorly, you know exactly what to do,
No-one needs to ask – you find blankie, do we remember to say thank you?
You worry when she’s flappy and every time there is a hospital visit,
You put GG first every time, we’ve never seen you hesitate.

Big sister, you are amazing, you are so constantly kind,
You stand up for your GG, a better sister she could not find,
Your patience and your empathy – it’s an incredible mix,
Who would have guessed, no-one could know, that you are only 6.

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