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.

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